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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

Greg Guthrie: Hi everyone, I'm Greg Guthrie, a member of ASCO's patient education content team, and I'll be your host for today's podcast. ASCO is the American Society of Clinical Oncology, and we're the world's leading professional organization for physicians and oncology professionals caring for people with cancer. Today we're going to be talking about what patients should know about cannabis, cannabinoids, and cancer. ASCO recently published a clinical practice guideline on cannabis and cannabinoids for adults with cancer.

I'm happy to have 2 of the co-chairs from the committee that developed this guideline as our guests today. Dr. Ilana Braun is an associate professor at Harvard Medical School. Thanks for joining us, Dr. Braun.

Dr. Ilana Braun: Thanks so much for having me.

Greg Guthrie: It's a pleasure to have you here today. And Dr. Eric Roeland is an associate professor of medicine at Oregon Health and Science University. Welcome Dr. Roeland.

Dr. Eric Roeland: Thanks, Greg.

Greg Guthrie

Great. So before we begin, I want to note that neither Dr. Braun nor Dr. Roeland have any relationships to disclose related to this podcast, but you can find their full disclosures in this podcast's show notes.

So let's start with the fundamental question about this discussion, and that is what is a clinical practice guideline and how does it help guide cancer care? Dr. Roeland, can you start with this?

Dr. Eric Roeland: Of course, yeah. A clinical practice guideline describes the best practices or what clinicians call the “standard of care” with regard to a specific topic. So this is kind of the blueprint that clinicians use to guide their practice when taking care of people with cancer. And the American Society of Clinical Oncology clinical practice guideline on the use of cannabis and/or cannabinoids summarizes the best available data collected specifically from humans in clinical trials, and we combined that with a multi-disciplinary panel of expert opinion.

Greg Guthrie: Yeah, I think it's really important to always remember that best evidence comes from research in humans as well as from clinical expertise. So it's the best recommendations that we can have to support cancer care.

Dr. Eric Roeland: Greg, I also think it's very important to understand that there are different places that we gain knowledge in research. One is specifically when we are trying to figure out how a drug works, and we will test that in what we call “preclinical models,” which is usually within animals. And then, once we’ve determined safety and efficacy, then we start taking that information and approach studies in humans. And so when our listeners are learning about new data in the use of cannabis or cannabinoids, I encourage everyone to always stop and ask, is this data coming from the animals or is this from humans?

Greg Guthrie: That's such an important point. And I think it's so essential to always look for that piece of evidence whenever you're reading about scientific advances. Alright, so let's take a moment to talk about what it means when we say cannabis and cannabinoids. Dr. Braun?

Dr. Ilana Braun: Cannabis, which is better known as marijuana, is a plant that humans have turned to for thousands of years as a medicine, in manufacturing—for instance, in the making of rope­—and for enjoyment.

It's often mistakenly viewed as having one main ingredient, tetrahydrocannabinol, or THC, but it actually has more than 300 ingredients that act in the body. Some of those ingredients are referred to as cannabinoids. There are 2 cannabinoids of greatest interest, THC, which I just mentioned, and CBD, cannabidiol. THC is responsible for the high feeling some people experience with cannabis. CBD is not.

Currently in the U.S., some cannabis products containing these cannabinoids can be sourced at the pharmacy, others at cannabis dispensaries, and some through more informal means.

Greg Guthrie: That's great. Thank you for that definition here as we continue this discussion. So what do people with cancer typically think cannabis and cannabinoids will do to help them? Dr. Roeland?

Dr. Eric Roeland: Well, it's a great question, Greg, because in clinic, when patients and their loved ones express interest in either starting cannabis or cannabinoids or are currently using them, I always want to explore what their goal of use is. And interestingly, the goals of use are far-reaching. And I have heard everything from, to help with everything, to cure my cancer. And so it's incredibly important to understand why people are reaching towards these products, to understand what their goals are. If they're focused on using this to treat the underlying cancer, or instead of standard cancer therapies, we have grave concerns about this approach. And it may lead to worse outcomes of your cancer.

However, if cannabis or cannabinoids are being used to help with controlling some symptoms during their cancer treatment, it may be helpful. And especially in one particular case where people have really bad nausea and vomiting that persists despite our best medicines to prevent it.

Greg Guthrie: Thank you for that, Dr. Roeland. Dr. Braun, did you have anything to add?

Dr. Ilana Braun: Maybe I will just point out that decisions on what to target with cannabis are often made through trial and error or in consultation with dispensaries, but not as much as I would prefer in consultation with clinical teams.

Dr. Eric Roeland: So I would also add that it's incredibly important to bring these topics up with your clinical team because although cannabis and cannabinoids are considered safe by many because they're quote “natural,” it's important to recognize that they actually can interact with many of the other medications that you're already taking.

For example, patients with cancer might be experiencing really bad pain or anxiety and taking things like opioids or benzodiazepines. And when you combine that with cannabis, it can prolong some of the effects of sedation or confusion. I'd also like to point out that this is not a time where people want to try cannabis for the first time, when they are weak and/or experiencing poor appetite and higher risk of falls. This is not the best time to be trying cannabis or cannabinoids without clear guidance from the clinical care team.

Greg Guthrie: Do you find in writing this guideline and through your clinical experience that most people who are asking about cannabis and cannabinoids, that they already have been trying to use it or are considering it? Because there's a difference there, right? What goal are they looking for, and do they already have a predetermined assumption about what's going to happen with these?

Dr. Eric Roeland: You know, Greg, as clinicians, we talk about a lot of hard stuff. We talk about challenges in terms of health care, access to care, cultural differences, financial toxicity. And it's so fascinating to me that we don't talk about something as simple as whether or not patients are using cannabis. And the reality is that when patients actually bring it up in clinic, I would say that most times they're already using it and are just simply asking for some advice on how to use it safely and effectively. So once I decided to lean in on this topic and create a space for patients and their loved ones to bring it up in clinic, I have found that it's brought up during most clinical encounters.

Greg Guthrie: Fascinating. And so that's likely why the first recommendation of this guideline addresses the importance of communication between doctors and patients on this topic, correct?

Dr. Eric Roeland: Yes, absolutely. I think that doctors are reticent to talk about this topic because of concerns around legal issues, which can be highly varied across the country. And Dr. Braun can speak to this more.

Dr. Ilana Braun: Yeah, so in order to offer the very best care possible, I think that medical teams should know about all the medicines and supplements a person is taking. And this includes cannabis and cannabinoid products. Why? Well, because, as Dr. Roeland mentioned, cannabis and cannabinoids can sometimes decrease the effectiveness of some therapies that a person is on, likely including some cancer treatments, and they can also worsen side effects of other therapies. And then at the same time, cannabis and cannabinoids can be helpful in managing some symptoms of cancer and side effects of cancer treatment. So using them involves a careful weighing of risks and benefits.

So for these reasons, oncology teams really do want to be part of the conversation as someone thinks through decisions around cannabis and cannabinoids. The ASCO guidelines encourage clinicians to be open and non-judgmental and welcome transparent discussions with patients about cannabis and cannabinoids. From there, clinicians should either assist personally if they feel qualified to do so, or refer a patient to high-quality information or an advisor with greater expertise.

As for the types of information that might be helpful to share with the clinical team, a person with cancer who consumes cannabis or cannabinoids might wish to share why they're turning to cannabis, where they get their products, the active ingredients in them—so is it mainly THC or is it mainly CBD­—how they consume them, are they smoking, are they vaporizing, are they taking them by mouth, how often they consume them, what do they experience as the benefits and risks of using cannabis and cannabinoid products? Their clinicians may wish to know whether or not the cannabis products are being used as an add-on to standard treatments or whether they're being used in the place of standard treatments. And as Dr. Roeland suggested, they probably will want to know how much this practice is costing the patient each month and whether it is affordable.

I think it's especially important to speak with your clinical team if you are considering using high-potency cannabis paste in an attempt to treat cancer itself. So not just manage symptoms, but actually treat cancer itself. The reason I think it's so important to share with your cancer team is that these cannabis pastes tend to have very, very high concentrations of THC and sometimes even CBD. And I think your cancer team can be helpful in thinking through the risks and benefits of that, helping to monitor side effects that might arise.

It is commonly the case that people feel a little bit of confusion with very high doses of oral THC.

Dr. Eric Roeland: I absolutely agree. And I think these high doses of cannabis products, they're often a tincture and delivered in a syringe. And it might look like black tar. And people are told to start off with the dosing of a grain of rice. But then they're told that the dose to treat their underlying cancer can be higher than a gram of cannabis a day. In some places it's a gram and a half. This is very high dosing, and it's going to cause people to feel extremely fatigued and increase the risk of falls and being sent to the emergency department. So I want to warn people about this practice in particular, because it can cause harm. We have no evidence that it actually works.

Greg Guthrie: Thanks for that information there. I was wondering, is there a certain person on the health care team that patients should consider talking to, or anyone?

Dr. Ilana Braun: I think anyone. Health care teams keep in close contact with each other. And so this kind of information would be shared amongst the team. So lots of cancer patients begin by sharing with their infusion nurse or their nurse practitioner. They don't even need to share necessarily with their oncologist as a first step. And anyone on the team should, after these guidelines, be able to access high-quality information through their institutions.

Dr. Eric Roeland: And for those patients who might be in a location where they don't have access to an expert or don't have access to educational resources, I think one of the strengths of this current guideline is that we include an appendix, which clinicians can actually use as a 1-page handout for patients and caregivers to answer some of these most basic questions.

For example, I think there's a lot of misunderstanding about how to take cannabis or cannabinoids. And what we do see is there's a big difference between ingesting orally an edible versus smoking or inhaling cannabis. And so, for example, cannabis when eaten by mouth can take up to 2 hours to have its peak effect. And unfortunately, what happens is that patients won't feel anything after several minutes to a half hour and then stack doses to the point that they get a much higher dose than they really need. And so we really encourage people to be aware of, if it's an edible, that it can take up to 2 hours. Whereas with your breathing it in or vaping, the effects can happen almost right away.

But again, it's important to recognize that cannabis, whether it's smoked, vaped, or ingested, can be in your body for up to 12 hours and may even impact your ability to drive. So it's important that if you are going to use these tools in combination with the rest of your medicines, it's important to do it in a safe way.

Another product that is now available, even over the counter at many grocery stores, is cannabidiol, or CBD. CBD in its pure form doesn't have the euphoria associated with products that contain more THC. Most people are using this as an anti-inflammatory, or targeting sleep.

I would like to recognize that in our review of the literature, we discovered that high doses, meaning more than 300 milligrams of cannabidiol a day, actually changed the measurable enzyme levels of the liver. These enzyme levels in the liver are the same levels that we use to determine whether or not you can get your chemotherapy. So you want to make sure that you're not taking excessive doses of cannabidiol, meaning more than 300 milligrams a day, because you don't want your chemotherapy delayed because your liver enzymes might be elevated falsely from the use of high doses of cannabidiol.

Greg Guthrie: That's great, Dr. Roeland. Thanks for adding that. As an additive or part of the cancer care plan, like with all medications, we need to be aware of what we're taking and report to our health care team so we can watch for interactions and potential side effects, right?

So what are the rest of ASCO's guideline recommendations when it comes to this guideline for cannabis and cannabinoids?

Dr. Ilana Braun: So as a committee, we submitted cannabis and cannabinoids to the same level of rigorous scrutiny that we would any other aspect of oncologic care.

I can think of few other ways to validate this area of oncology science than to do so. And after an in-depth evaluation, the ASCO committee concluded that of all the reasons that a cancer patient might medicate with cannabis, the best scientific evidence supports using cannabis or cannabinoids to help with nausea and vomiting caused by cancer drugs when standard medications for nausea and vomiting don’t work well enough.

Of note, ASCO guidelines make clear that there isn't evidence to hang our hats on that cannabis and cannabinoids can treat cancer itself. What's more, early evidence suggests that cannabis and cannabinoids may actually worsen outcomes for people taking a cancer treatment called “immunotherapy.” Gold-standard clinical trials are necessary to confirm these worrisome findings, but for the time being, people on immunotherapy should probably best avoid cannabis and cannabinoids. I think Dr. Roeland and I and the rest of the committee have hope that more scientifically proven indications will emerge as cannabis research progresses.

Dr. Eric Roeland: Dr. Braun has also pointed out to me that there's literature and evidence supporting the use of cannabis and/or cannabinoids for the management of chronic pain not related to cancer. And this has been actually described in other guidelines, and we need to recognize that our patients living with cancer often have chronic pain that may even predate their cancer experience. However, we do not have strong evidence to support that the use of cannabis and/or cannabinoids helps with cancer pain, which is a common reason that people are reaching for these medicines.

Greg Guthrie: Great, thank you, Dr. Roeland. Thank you, Dr. Braun. So this guideline also recommends the use of cannabis or cannabinoids mainly within the setting of a clinical trial, and why is that?

Dr. Eric Roeland: Well, Greg, I think it's incredibly important for people living with cancer and their loved ones to recognize that access to cannabis has far outpaced our ability to validate and study the best methods of using cannabis and cannabinoids in people living with cancer. Meaning access has far outpaced the science that supports its use. We also recognize that just because something is quote, “natural,” doesn't necessarily mean it is also safe, especially in combination with many of the drugs and cancer therapies that patients must receive while they're on treatment.

Therefore, for those of you very frustrated by the lack of evidence to support the use of these medicines in people living with cancer, you should be the first in line to volunteer for any studies that help us collect prospective evidence to demonstrate not only safety but efficacy.

I would also like to recognize how challenging it can be to perform these types of clinical trials based off of the formal designation by the federal government classifying this—cannabis and/or cannabinoids—as a Schedule 1 medicine, which creates multiple barriers for those clinical researchers who want to fully describe the safety and efficacy of these drugs. Therefore, if there is someone near you who is doing clinical research in this space, we greatly would appreciate your involvement in those clinical trials.

Dr. Ilana Braun: I agree with Eric. By participating in clinical trials, a person is doing a very kind thing for others, helping to advance the science behind cannabis and cannabinoids. Only through this controlled, systematic testing will the medical community understand whether cannabis and cannabinoids can be helpful for indications beyond the chemotherapy-related nausea and vomiting.

And we as a society need to understand whether cannabis or cannabinoids can be helpful for cancer pain, for cancer-related poor appetite, to name just a few. These clinical trials will help us move the field forward. And in terms of personal benefit, I could imagine that clinical trials might offer someone more quality-assured cannabis products, more scientifically based dosing guidelines, careful clinical observation should side effects present, and potentially efficacy. But of course there are no guarantees. That's why we're doing the trial.

Greg Guthrie: Thanks, Dr. Braun. Yeah, clinical trials are a safe way to grow our knowledge in cancer care and treatment. And definitely, as Dr. Roeland said, if we don't have evidence, the evidence in this current guideline to support recommendations, then the only way we can truly find that is by participating in clinical trials. And so I would just note that if you're interested in participating in a clinical trial, talk to a member of your health care team. And there are a number of online resources, such as ClinicalTrials.gov, where people can look for research. That's how we advance the science. So is there anything else people with cancer should know about using cannabis or cannabinoids during cancer treatment?

Dr. Eric Roeland: One key message I think for our listeners is to recognize that people have varying tolerances to this class of medicines. And what I frequently observe is that an older patient is offered an edible by their well-intentioned children who want their mom or dad to start eating more in the setting of their cancer. Unfortunately, I've experienced taking care of people that have had side effects associated with the use of cannabis or cannabinoids leading to even emergency department visits and hospitalizations.

And although these products are overall very safe and you cannot quote “overdose” on them or stop breathing because you're taking too much cannabis, it can be very uncomfortable to feel very confused and unable to stand or walk. That can be prolonged for many people, especially those who feel especially weak during their cancer therapy.

And our loved ones mean well, but sometimes the advice that they're providing could actually cause harm. And sadly, I've had many children of patients who have felt incredibly awful after their loved one had a side effect from these medicines, which actually delayed their cancer care.

Greg Guthrie: Excellent point, Dr. Roeland, thank you for that. Dr. Braun, any final notes?

Dr. Ilana Braun: Yeah, so following on Dr. Roeland's thoughts, I would also add that it's important to think about safe storage for such products, particularly if there are children or pets in the home. Cannabis products sometimes look like medicine and sometimes look like candy or baked goods. And so it's important to store them out of the reach of minors and pets.

And the last thing I'll emphasize is this: if you are living with cancer and medicating or thinking of medicating with cannabis or cannabinoids, please consider sharing this information with your clinicians so that they can help you strategize about an optimal course.

Dr. Eric Roeland: I would like to take a moment to thank the American Society of Clinical Oncology for recognizing that we need to address this important need for people living with cancer. And rather than ignore something that's happening every day in the clinic, ASCO chose to convene a panel of experts and coalesce the data and try to figure out what best practices are in this space.

And to that, I am very proud to be a member of ASCO who chooses to lean into these difficult topics rather than run away. I would also say this is a keen opportunity for everyone to advocate for more research in this space. Because talented folks like Dr. Braun, who want to do research in this space, need advocates, need participants, and need funding to fund this type of research. So again, kudos to ASCO, the members of the panel, and, of course, our patients.

Dr. Ilana Braun: Thank you, Eric, for saying that. I am so grateful to have been a part of this really cutting-edge process. And I think that clinical guidelines will help to de-stigmatize cannabis care in a meaningful way in the oncology clinic.

Greg Guthrie: This has been great. Thanks, Dr. Braun. Thanks, Dr. Roeland. If I can interject, I think one of my biggest takeaways here is every patient, caregiver, if they are or are considering cannabis or cannabinoids, the biggest question is to ask, why am I choosing this? And then to find a member of their health care team and talk to them about that. And that's how we protect each other's health and we ensure the best results possible for everyone. So I want to thank you both so much for this engaging discussion. Dr. Braun, Dr. Roeland, thanks for joining us today. And our listeners, if you'd like to learn more about this guideline, please visit www.asco.org/guidelines. Thanks so much for joining us today, and be well.

ASCO: Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this Meaningful Conversations podcast, Dr. Karan Jatwani talks to Dr. Amy Case about what people with cancer should know about hospice care, including the difference between palliative and supportive care and hospice care, who is eligible to enroll in hospice care, and the types of support available for people receiving hospice care and their family and caregivers.

Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations.

Dr. Jatwani is a Medical Oncology Fellow at Roswell Park Comprehensive Cancer Center.

Dr. Case is the Lee Foundation Endowed Chair of the Department of Palliative and Supportive Care at Roswell Park Comprehensive Cancer Center, and Professor of Medicine at the Jacobs School of Medicine and Biomedical Sciences of the University at Buffalo.

View disclosures for Dr. Jatwani and Dr. Case at Cancer.Net.

Dr. Jatwani: Hi, everyone. My name is Karan Jatwani. I'm one of the 3-year fellows at Roswell Park Comprehensive Cancer Center. I have finished my palliative care fellowship from Memorial Sloan Kettering Cancer Center. And I am interested in the integration of oncology as well as palliative care, and that is where I envision my future career to be. And it's my pleasure to be involved in a podcast with Cancer.Net and looking forward to it.

Dr. Case: Hello. My name is Amy Case, and I'm the chair of the Department of Supportive and Palliative Care here at Roswell Park Comprehensive Cancer Center, and we're in Buffalo, New York. So I appreciate being invited to speak today. And we also have a fellowship that we run here and a pretty comprehensive department with 8 divisions that include palliative, social work, psychiatry, psychology, spiritual care, bioethics, and geriatrics, and also employee resilience. So we have a lot of kind of passion projects we work on in our supportive care department.

Dr. Jatwani: Thank you so much, Dr. Case, for joining us today. I think I've always admired your work. And just to start off, just for our listeners and our audience, if you can just give us a brief idea of what palliative care is, I think that would be the best segue to enhance the discussion.

Dr. Jatwani: So “to palliate” means to make feel better. And when I talk to patients about what it is that we do, I talk about how we take care of the whole person, which includes the physical symptom management, the emotional support, which could include psychiatry, psychology, or social work support of the emotional piece. And then also the spiritual support, which often we work as a team. In order to be palliative care, you actually need to be a team. It can't just be one physician, for example, doing palliative. You need to work as a team. So generally, a core team consists of a physician, a nurse, a chaplain, a spiritual care professional, and a social worker at its core. But sometimes it can be a nurse practitioner providing that or other specialists helping on that team.

Dr. Jatwani: I think one of the key questions that always arise with the patients is, as soon as you talk about palliative care, patients start equating it to death. How do you make sure that the patients you're interacting with, how do you differentiate it with them, and how do you relieve that anxiety whenever the patient hears “palliative care”?

Dr. Case: So no matter what you call the work that we do, there will always be a stigma. So if we change the name to yellow banana, people would be afraid of yellow bananas, right? So I think that the word hospice has-- I joke that it's kind of like a 4-letter word type of situation. We call it “the H word.” Sometimes patients are really fearful to hear that word. And even now, palliative has adopted this stigma. So generally, what I do is I kind of say that it's focused on quality of life. The main goal is to help people feel better, live a better quality of life, to get through their cancer treatments. And I also educate them that people who receive palliative care tend to have better outcomes. Patient-reported outcome metrics are better. So patients often have a prolonged survival. They may be able to tolerate their cancer treatment better and get through those treatments. And that generally, I would say, is something that they're happy to hear.

That's something that they're usually, "Yeah, sign me up for that." When we start with somebody-- we spend an hour with every patient for a new visit. When I start with them, they're really skeptical. Oftentimes, they're looking at me mistrustfully, like, "What is this?" And by the end of the visit, they say, "Where has this been from the beginning of my cancer journey? And why am I only getting this now? This was the best interaction I've had at this organization." And it's because we give them kind of what we call a “wrap-around care,” which is almost like a big hug. We use a lot of skills that include empathy. And with our communication, we often spend a lot of time listening. And I think people really walk out feeling heard. Even if you can't solve it or cure it, you can discuss things that can just make them feel that you were there for them and you listened. And that is very powerful.

Dr. Jatwani: I 100% agree. I mean, that has been my sort of experience as well during my fellowship. I took a lot of those learnings with me when I see my patients. But also, I think coming from an oncology standpoint, I can definitely now understand that I have been at fault when I have not given that palliative blanket that you were talking about at different times. And so my question is, when can patients ask for palliative care? And we'll discuss “the H word,” as you mentioned at the beginning. So we'll discuss with that as well. But when should patients undergoing cancer treatment, when should they ask for involvement of palliative care, or they should advocate for themselves or even the caregivers should advocate?

Dr. Case: Yeah. So I think that generally, palliative care, the beauty of palliative care is that it doesn't really have a time limit. Someone can ask for it anytime. And often, we encourage people right from the beginning. So there's people who may be looking for that extra added support right from the beginning. And so we usually encourage oncologists and the oncology teams to start those discussions themselves.

Dr. Jatwani: And I think at this point of time, I would like to definitely ask you. I think you mentioned “the H word” in the beginning. So can we discuss a little bit more about what is hospice care?

Dr. Case: So palliative care is provided on a trajectory. So it can be provided anytime, even for survivors, for people who are earlier in their diagnosis. But hospice has a timeline on it because it's actually a Medicare benefit that it's like almost like an insurance benefit that kicks in, but the government pays for the patient's care. And so in order to enroll or sign up for hospice, a patient has to have certain criteria in order to meet that. In order to get those things paid for. And so hospices have to—generally, it's when a patient has a life expectancy of 6 months or less, and they have decided that the cancer treatment, meaning chemotherapy, radiation in most cases, immunotherapy, the burden of that is higher than the benefit.

Most of the patients who see us in palliative are still getting their cancer treatment, and we're helping them walk the journey with them through their treatment, helping them feel better, starting those conversations. And then we do something called a transition to hospice. So many of the patients we see in palliative end up transitioning to hospice. How is palliative care different than hospice? How is hospice different than palliative care? They're very similar. The philosophy of care and the way it's provided is almost exact, meaning that it's a team-based approach made up of physical, emotional, and spiritual support for the patient provided by a team. Although in palliative care, many times that's done in a clinic or an inpatient setting. There are home palliative programs that exist. We have one here at Roswell as well. But hospice, 80% of the time, is done at home. Because generally, when people prefer to pass away and we talk to them, where do they want to be at the end of their life? I'd say 95% of people do want to be at home if that's feasible. The biggest barrier that they are worried about dying at home is that they worry about being a burden on their loved ones.

And so that's the way I frame those discussions, is that I ask them about what are the things that they're hoping for. What are the things that they're worried about? And when I find out, inevitably, like I said, it's probably the number 1 fear of people to be a burden on their loved ones. It's this wonderful thing that can reduce burden on family to help care for you and have you be at peace in the place that you wish to be.

Dr. Jatwani: I 100% agree. I think you framed it perfectly that if the discussions-- I think, as you said, they should happen at the right time point. And the other thing is I think they should happen often. They should not happen only once. They should happen at every juncture of time when the cancer care has sort of transitioned into going into the more risk and less benefit window. And that's a spectrum, as you mentioned. It does not have to happen only once, and the provider feels, “OK, I’ve done that discussion. Now I don’t have to do it again.”

Dr. Case: It’s a journey.

Dr. Jatwani: It’s a journey, yes.

Dr. Case: I think we always talk about a journey and that advanced care planning does not happen, excuse me, just once in the trajectory. It happens over multiple time points. And I call it “loosening the lid,” where the lid is often on really tight. There’s maybe often mistrust of the health care system. People are really scared. And you really need to give them that emotional support. And that’s why palliative is so beautiful because we provide them that wrap-around hug when they’re feeling at their most vulnerable. And then when they have comfort with us, then it’s much easier to discuss these really tough topics. And I think establishing rapport, getting to know them as a human being and who they are is extremely important. So, for example, my style is to start any medical visit with a social interaction and asking them about themselves socially. I say, “Let’s put the cancer aside. I want you to tell me about you. Tell me about your family. Tell me about the things that you enjoy doing for fun.” And they often laugh because they want to talk just about the cancer, right? They say, “I don’t have fun anymore.” And then I try to ask them about the things they did before they had cancer. And you see them light up, and you see the rapport being built, and you see the trust. And once you have those types of relationships, these discussions become much easier.

Dr. Jatwani: I agree. So just to transition a little bit more about hospice care, I think you talked about that this hospice care is a Medicare benefit. Can you tell our audience, is it only at home or is it available inpatient as well? And can you speak a little bit about that?

Dr. Case:  Sure. So I mentioned before that generally, the majority of hospice care is preferred to be in the home, and really taking care of someone at the end of life actually can be less scary when you have the support of hospice. And so anyone who’s in the hospital where a discussion is had and then advanced care planning is done, and they say, “You know what? I don’t want to end up being on a ventilator. I’m going to elect to be a, “do not resuscitate or allow natural death.’" If that happens, I actually think it's almost imperative for hospice to also be consulted and offered. Because if you send someone home that is a “do not resuscitate” without those family support in place, the family will struggle. And so I think that it goes hand in hand. So dying at home goes hand in hand with having hospice in place. End of story. You need to have those supports in place. I do not think it will work out well for the family if you do not. And so there are rare circumstances where some physicians provide that support or home palliative can provide that support. But hospice really is the gold standard. So I'd say most of it is in the home.

But once someone enrolls in hospice, there is caveats where if a patient is having uncontrolled symptoms that are not managed by the nurses in the home and the physicians by phone or by home visit, that the patient may be able to be brought in to an inpatient hospice unit or a hospital. They can unelect—to come off of, or unenroll—in hospice. For example, they change their mind. They decide, oh, they fall they break a hip, OK? And hospice is not going to fund a non-cancer-related hip fracture repair. So they would have to unenroll from that Medicare benefit, hospice Medicare benefit, and enroll in a different part of their insurance. And it's very easy to enroll and unenroll. And so there are different parts of that Medicare benefit that pay for different things. And so if somebody gets a hip fracture, it doesn't mean they have to not have it repaired. I mean, so you adjust and unenroll them from hospice, get the hip repaired, and then enroll them back in the hospice. And so those types of things can totally be done. It doesn't mean the patient can never come back to the hospital. It doesn't mean they can't change their mind. It doesn't mean that if, say, they get pneumonia, that they can't have their pneumonia treated. So simple infections, like Clostridium difficile (C. diff), pneumonia, the hospice actually gives antibiotics.

They manage a lot of medical treatments like anticoagulation and things like that. So there are, depending on the hospice, leeway with some of those medical treatments. For example, total parenteral nutrition (TPN), percutaneous endoscopic gastrostomy (PEG) tubes, some of those things can be managed in hospice. However, if a PEG tube or a TPN is causing more burden, they will continue to have those discussions about, is this treatment in the best interest of comfort and quality of life? And so that's generally the philosophy of care. And so, yes, they can be inpatient. There can be coming back to the hospital. And there are hospice inpatient units kind of all over the country. Some cities may not have hospice inpatient units, and they have other things like something called a “comfort home,” where comfort homes are depending on the area, the region that you live. Comfort homes exist in some cities where they're run by volunteers, and a patient may not be able to be at home, but they can go to a comfort home. Sometimes hospice can be provided in an assisted living where a patient's home is actually not home, it's in a facility or it can be provided in a nursing home. However, I think there's a misperception that hospice pays for the room and board of those places, and that is actually not true.

So if someone needs a facility to live, then the family or the patient is on the hook, unfortunately, for the room and board. And so a lot of times, that delays discharge. So, for example, family does not want to take that patient home. They are not able to do that. The patient then needs a facility with hospice. The assumption is the hospice will pick up the bill of the facility. So that does not happen. But hospice covers all of the costs related to the care of the patient that's related to their hospice diagnosis.

Dr. Jatwani: For patients who are living alone, who are in the elderly population, who are undergoing cancer-directed treatments, for those patients, is hospice an option? If it is, because that is always a challenging area that we face, how do you deal with those patients?

Dr. Case: That's very challenging. Generally, we would call on social work and some of those specialties to help us figure out a support care network for that patient. And so often, you can actually recruit folks to take shifts coming in and checking on that patient. And so, yes, you can have hospice care for a patient who has a care-- generally, you need to have a caregiver who is around for that patient. Ideally, in an ideal world, there's somebody with that patient 24/7 when the patient is really ill. If the patient is pretty functional and they're on hospice, walking around, there may be some hours out of the day where they may not need someone with them. And really, we kind of determine that on a case-by-case basis. I would say it's not a door-shut situation that if someone lives alone, they could never have hospice. I would not say that. But in an ideal world, we do need to recruit someone to be there with the patient.

If someone has absolutely no one to be there with them during hours during the day, which I think is pretty rare, then generally, if the person is too ill to stay home alone, it'll be a conversation that you have with that patient that they may be moved to a higher level of care, meaning that they may need a skilled nursing facility with hospice on board coming in and checking on them. That's their new home, or they may need an assisted living. And there are some facilities that provide their own hospice, meaning that if you go to that facility, they have a team that's built into that facility that provides them the end-of-life care at the facility, and they don't allow in external hospices. So it kind of depends on your area where you're practicing and asking those questions as, "Do you have an external hospice or do you provide hospice services internally?" And those are questions I often steer patients to ask.

Dr. Jatwani: Just some parting thoughts on in terms of, as you said, hospice has a very selective criteria. And some patients might say, "How can you prognosticate me for living less than 6 months?" That's a challenging question that we often get. And I think you have answered it partly, that it's enroll “on and off switch” kind of situation. But what if a patient starts feeling much, much better on hospice and they feel that they want to come back and get cancer-directed treatment, how does palliative care and hospice care come into that domain?

Dr. Case: Prognostication, when a physician is asked to prognosticate a patient, we call it “the art of prognostication” because you can't always look it up in a textbook and get the right answer. And what one physician may determine is a prognosis for a patient, another one may give a different one. Because we look at the same things, but a lot of times, there's a clinician estimate that comes into it that is really one of those, you put a bunch of facts together and you come up with what we call an estimate. And so sometimes, we may be correct. Sometimes, we may underestimate or we may overestimate.

If a patient enrolls in hospice and they, for example, are doing a lot better, they're outliving the 6 months, the hospice programs often reevaluate those patients, and they do allow folks to stay enrolled with hospice care sometimes quite longer than the 6 months. Sometimes, people are on hospice a year or even longer. What they need to document is that the patient has an ongoing need where they need the multi-disciplinary team supportive care. And so as long as you meet certain criteria, and generally, the criteria are often that they have the continuing progression of the cancer or whatever the other medical illness is, the disease itself, and advancing illness, whether that be chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF). It doesn't have to just be cancer. And you need to also have often a documentation of potentially continued functional decline or functional impairment. So prognosis is tied hand in hand with functional status. And so we don't just look at the computed tomography (CT) scan when we're determining prognosis. We look at nutritional. We look at weight loss. We look at appetite. We look at functional status and comorbidities. And there's a lot of other things that go into that, not just, “Is the tumor growing on the scan, yes or no?” So it's really important to look at a wide array of things when we're determining prognosis.

Dr. Jatwani: Yes. And I think that sort of I just wanted to give our patients some idea of how we determine. I know there are a lot, many things that we have not covered, and we haven't even touched the expertise of Dr. Case, which we hope to do that in the future. And from my end, these are the questions that I had. And we hope to reconnect soon Dr. Case, and get some more insights into other aspects of palliative care, which you have done a lot of wonderful work in.

Dr. Case: Thanks, Dr. Jatwani.

ASCO: Thank you, Dr. Jatwani and Dr. Case. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this podcast, the Reverend Jane Jeuland discusses what people with cancer should know about the role of chaplains in cancer care, including how chaplains are trained, the type of support they can provide for people with cancer and their family members and caregivers, and how someone with cancer can ask for spiritual support from their health care team.

Ms. Jeuland received her Masters of Divinity from Yale Divinity School. She is an ordained Episcopal priest. She received her chaplaincy training from Yale New Haven Hospital and is a board-certified chaplain. She has served as an oncology chaplain and was the first palliative care chaplain at Yale New Haven Hospital. She has no relevant relationships to disclose. 

Jane Jeuland: Hi, my name is Jane Jeuland, and I am the palliative care clinic chaplain at Yale New Haven Hospital. I'm here today to talk a little bit about what I do at Yale New Haven Hospital, and also, what is a chaplain? What is it that we offer and provide? How are we trained? And some other questions that people have for us as chaplains.

So I'll start by just describing a little bit about what I do at Yale New Haven Hospital in my role. In addition to seeing patients in our clinic, I visit with patients one-on-one through video platforms, phone, and I also visit with patients in person for scheduled appointments. And in those appointments, we get to know each other, we build a rapport and a relationship. And I help people process how they make meaning, find purpose and belonging in their lives, and how that is impacting their cancer care, but also how their cancer is really impacting their meaning, purpose, and belonging. In addition to those individual meetings, I also visit with patients in group settings. I host several groups over Zoom where patients get to talk to one another and share deeply and support each other.

And last but certainly not least, I also have started a podcast with my patients called In the Midst of It All, which you can find on Apple Podcasts and Spotify. And in that podcast, patients share their stories that they've written about their lives, about their cancer journey, and about their spirituality, and how that has helped them through all that they're going through.

So, how do chaplains get trained? I think this is one thing that people ask me quite a bit. What is your training like? Our training is pretty extensive. We need to have a 3-year Master's degree, typically a degree of divinity. And then after that, we have a year of training called Clinical Pastoral Education, CPE for short. And in that year of training, we are with a cohort of about 4 to 5 other chaplains in training. And we are supervised by a highly trained supervisor as well who has quite an extensive and long process to get certified to do that. And what our supervisors do is they help us really go out, visit with patients, and then reflect on those visits. We do things called “verbatims.”

So what is a verbatim? When we write up a verbatim, we're writing up word for word an interaction that we have with a patient. And obviously, we will keep the patient confidential. But we do this with our group and with our supervisor to really kind of drill down and see where are the places that we are inserting ourselves, our own beliefs, our own needs, and how can we really better meet the patient where they are? We talk a lot about positive use of self so that we become really aware of our own self in the midst of our interaction with patients. And over the course of the year, we really learn how to focus on the patient's spirituality, their beliefs, their values, what they need in that moment.

And we're all about helping people discover their spirituality and their faith. I think sometimes a lot of people think that we might be coming in to convert someone or to make them believe a certain belief system or a certain religion. But actually, we're really here to help any patient and caregiver really figure out what it is that they believe, and how that's impacting their cancer care or how their cancer is impacting their beliefs. So that means that we do visit with people of all different faiths. We visit with people who are atheists and agnostic as well. And really, again, just try to help people discover, what is that value that you have? What are your beliefs? Where do you find meaning, purpose, and belonging?

And so what are some things that come up as we meet with patients? I, again, work in palliative care in the clinic settings. I'm outpatient. But a lot of chaplains work inpatient in a variety of settings. And so you'll have chaplains in a medical intensive care unit (ICU), or you'll have a chaplain in an infusion suite or on a floor as well. And so we see patients at all different stages. We see patients who are just newly diagnosed and have a cancer that's highly treatable. We see patients who are doing really, really well on their treatments. And we also see patients who are starting to kind of struggle with lots of symptoms, pain through sometimes months or years of cancer treatments. And then on the other end of this spectrum, we see patients who are very advanced in their cancer, have a terminal diagnosis, and we really see them through all that that entails, the outpatient visits as well as the inpatient, and even as someone comes to the end of their lives.

And so what can come up in our meetings as I meet with patients? When someone's diagnosed with a terminal diagnosis, there is a lot of discussion about fear of dying, what happens in the process of dying, and then also, of course, what happens after we die? What is there after we die? Is there anything after we die? Or what is the afterlife like? And so often, again, I try to help people really reflect on what they may think the afterlife is like, if there is one. And then we have rich discussions around that. For kind of that big question of what happens as we're dying, that's when I like to pull in other members of the team. But certainly, chaplains can help process that as well. We also really do help people articulate their thoughts about the divine and whatever name they give to the divine. And often, what I hear in my appointments is not so much, “Is the divine as God giving me this cancer?” but, “Why would God allow it?” So as I talk with folks, folks will say, "I really believe in a loving God and a God that heals and a God that helps us. Why would a God like that allow me to have this cancer? Why would God allow my loved one to have this cancer and for their lives to be taken far, far too soon?" And for that, it's a tricky one. We, as chaplains, don't have a pill that we can give you and send you home and say, "OK, here's your prescription. Take that, and you'll get all the answers to why would God allow this?"

So it's really a process of talking through this. It's a process of kind of discovering a little bit more about what we believe God is, what the patient believes about God, and God's character in the midst of it all. And it's also just sitting in the mystery of it that we don't know. We don't know why a loving God would allow this, why a God that heals would heal some people and not others, why a God who heals would heal at this point in your life, and then not at a different point in your life, and why this happens at all. And so chaplains don't rush quick to give advice. We allow sitting in that grief, in that suffering, in the sorrow.

But then again, as we talk about who is God for this person, I also like to help people see, OK, if God isn't healing right now, if we can't understand why God is allowing this to happen, where is God in the midst of it? And this is what I love about my job so much is that I hear from such a variety of faiths and people of different values and spiritualities, how they do see the divine working in their lives. And so for some, "I have a lot of pain, but I know that God is with me, and I don't feel alone in this." Or, "I was feeling grief and loss over a loved one and wondering what my afterlife's going to be like as I face the end of my life and I was having this turmoil. And all of a sudden, I felt this deep, deep, deep peace wash over me. And I feel like that might be God." Or for someone who maybe doesn't have a particular religion, they may say, "I know that the love of my family and friends is so powerful. It's helping me through this. It's getting me through the dark times. And I know that that is what holds us together. And it's more than just what we can see and taste and feel, that that love is something greater and bigger." So it's really rich conversations like that that I get to have.

I think also some other topics that come up is cancer is grueling. Cancer, it can be long. And there are things, people talk about scan anxiety. Of course, the side effects and physical pain. I hear a lot about insurance and how that's just so difficult and such a struggle to get on the phone, talk about insurance when time is so precious and so short. And for others who are healing from cancer, it sometimes is a lot of conversation about, "Well, how do I get back to life? And I used to do this amazing job, but I don't think that I can do that anymore. I don't have the stamina. I don't know how I would be able to do that job." And so I help people process that a lot. And again, that goes back to how do we find purpose in life, that meaning, purpose, belonging. And a lot of us find our purpose in work, in what we do. And so chaplains can help people through topics like that as well.

And for survivors, we're always so happy in our palliative care clinic to help people heal. A lot of people think palliative care is just end of life. It is not. I have a lot of survivors I meet with, and they'll talk about kind of always looking over their shoulder. Is it going to come back? And finding a way to give back and to help other patients. And that is something I really love helping people with is, how do we give back? What are some ways to help others after I've had cancer? How can I help people?

And so I have to say, I've been really, really privileged in my work as I meet with patients and individually in groups and help them write their stories and read their stories and interview on the podcast. I've just been so, so struck by all of the beauty, the resilience, the strength that I hear, the really depth and the richness of people's spirituality as they go through cancer care and really do some hard work to unpack and process all that's going on. And some of the common themes that I've heard is people will talk about how cancer has completely changed their perspective. And so people will talk about how before they had cancer, they were focused on their wonderful job, but also the pay and making sure they get ahead and can have stuff, that newest car or that bigger home. And when they have come through cancer and all that that entails, they start to think, "Gosh, you know what? I like those things, but what's much more important is the people that are right in front of me. It's the things that are free. It's time. It's talking with a loved one. It's really sharing deeply what's on your heart and mind, knowing that time is precious."

And so I really am so struck by some of the things that people will share with me about their loved ones, their caregivers. If you are a caregiver, you know that you are loved, and that everything you're doing is really helpful and so, so appreciated, and that the time that you spend together and the things that you're able to share is so important. It doesn't have to be a big trip or people think about bucket list things, and it doesn't have to be all that. It's sometimes just that conversation over coffee or as you're going to sleep at night, those words that are shared are so important. And so people's perspectives, I think, really do shift and change and deepen. And people also find God in the midst of everything that they're going through.

I had a patient who heard stories on the podcast and said, "I really want to write my own." So we worked together. And we talked a lot about her faith, and she wasn't really sure what to believe. She had had a hard time growing up in terms of her spirituality. And through her writing, and also through her cancer journey, she was able to really articulate her sense of God as a loving companion to give her peace, not one that's punishing, but a God that's loving. And now, as she comes to the end of her life, she's really finding a great more deal of peace, thinking about God and knowing that God is with her. I think as I share stories like these, though, I'm always so mindful, too, that I think in our culture, we think a lot about things being 5 easy steps. You can do this, and you can get better, and you can find insight and meaning in 5 easy steps. And it's really not that. It's really a process. And so as you hear stories from other cancer patients who may be in that place of peace and accepting and belonging and you're not there, also know that they were not there at a certain point and that it is a process, and it does take time. And so, again, that's what chaplains are really here for. We're here to help unpack a lot of that, to help people process that.

And so you might be actually wondering, "You know what? I am going through a lot of cancer care here where I am, and I really would actually like to talk to a chaplain. How do I do that?" So the best way is to simply ask for a chaplain. We're most often called chaplains, but sometimes we're called spiritual counselors, spiritual care providers. So maybe a different term where you're located. But you can ask a nurse, your oncologist, anyone on the team, your social worker, to contact a chaplain. There are different levels of care in different settings. So you may have a chaplain in an outpatient setting, but maybe not. And so most likely, most hospitals have inpatient chaplains. If you are outpatient, though, and you really want to talk to a chaplain, I still encourage you to ask for one. And in that case, call the spiritual care or chaplaincy department directly, and you should be able to do that through your information line in your hospital. But in the hospital, for the most part, the hospitals have inpatient chaplains. Many have 24/7 on-call chaplains. And so always don't hesitate to ask the nurse, and we're happy to come by.

We also do provide support for families. And so this is something that we do quite often, especially in the inpatient setting, in an ICU setting, at those times when decisions are being made. What should we do? What we often call in our hospital setting “goals of care” conversations. What is the goal of care here? Are we going to continue with aggressive interventions? Are we going to start to move to aggressive comfort care? And so chaplains help talk through that as well. So you can always call or ask for a chaplain when you're inpatient, certainly when those decisions are being made. And we're there for you as a patient, but again, we're also there for your caregivers, your loved ones. And in those settings, we're often meeting with families sometimes outside of the room even. And we help your loved ones process as well. Just like I've mentioned, all the other things that I help patients process, we also help caregivers with a lot of those topics. In addition, of course, for a caregiver, we sit with them in the pain and the suffering and the loss and the anxiety, and talk through their ways that they find meaning, purpose, and belonging, and how they're processing all that's going on with their loved one, who's the patient.

I've heard from more than one patient that they say, "I feel like as hard as cancer is, it's easier on me than it is on my loved one. I hate to see what they're going through. I sometimes feel like a burden." But whenever I talk to a caregiver about that, they always say, "Absolutely not. You're not a burden. I wouldn't want to be anywhere else in the world." If they're sitting there in the ICU, long hours, surviving on coffee, very little sleep, lots of interruptions, sleeping in a chair beside your bed. Every single time, those caregivers will say, "I would not want to be anywhere else in the world. I want to be here. This is what I want to be doing." If you're the patient, feeling like a burden, know that more often than not, your loved one is really wanting to do what they're doing.

But caregiver burnout is real, too, especially if your care is going on for a long, long time. And so chaplains can help caregivers process that burden. And we also work with the team, sometimes social workers and others to find support systems so that if they need help, so that they can just have a moment to themselves, go for a walk, that we can help them think about resources that may be their faith community, their church, their synagogue, their mosque, their faith community can come and help give that relief or that respite for them, but also other resources in the hospital. So you may have an integrative medicine component.

So I hope that you've been able to learn a little bit more about chaplains, about how we're trained, about what we typically hear from patients, and what we can provide support around. How we also support caregivers. We are inpatient, we are outpatient, we are 24/7 most often, and how you can get in touch with a chaplain. I really encourage you to reach out to a chaplain. We're always happy to help. It's what we're here to do. So thank you so much for having me on the podcast today. It was really a delight to be here. And I hope you have peace. I hope that you find strength, meaning, purpose, and belonging in the midst of it all.

ASCO: Thank you, Ms. Jeuland. Learn more about the role of chaplains at www.cancer.net/palliative.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net (Cancer dot Net). This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this podcast, Dr. Fay Hlubocky  and Shelly Rosenfeld discuss what people should know about returning to work after cancer treatment. This podcast is intended for informational purposes only and does not constitute legal or medical advice. 

Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She's also the Cancer.Net Associate Editor for Psychosocial Oncology.

Ms. Rosenfeld is the director of the Disability Rights Legal Center’s Cancer Legal Resource Center, which provides free information and resources about cancer-related issues. 

View disclosures for Dr. Hlubocky and Ms. Rosenfeld at Cancer.Net.

Claire Smith: Hi, everyone. I'm Claire Smith, a member of the Cancer.Net team, and I'll be your host for today's Cancer.Net podcast. Cancer.Net is the patient education website of ASCO, the American Society of Clinical Oncology. Today, we'll be talking about what people with cancer should know about returning to work after treatment, including information about the legal protections available to people with cancer in the United States. Our guests today are Dr. Fay Hlubocky and Ms. Shelly Rosenfeld. Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She's also the Cancer.Net Associate Editor for Psychosocial Oncology. Thanks for joining us today, Dr. Hlubocky.

Dr. Fay Hlubocky: Thank you, Claire. It's such an honor and a privilege to be with you and Shelly today.

Claire Smith: Wonderful. Our next guest, Ms. Rosenfeld, is the director of Disability Rights Legal Center's Cancer Legal Resource Center, which provides free information and resources about cancer-related legal issues to members of the cancer community across the U.S. Thanks so much for being here, Ms. Rosenfeld.

Shelly Rosenfeld: Thank you. I'm honored and grateful to be here today.

Claire Smith: Before we begin, I should mention that Dr. Hlubocky and Ms. Rosenfeld do not have any relationships to disclose related to this podcast, and you can find their full disclosures on Cancer.Net. So, to start, Dr. Hlubocky, can you talk a little bit about some of the ways that people might think about work differently after an experience like cancer?

Dr. Fay Hlubocky: Thank you, Claire. That's such an important question to start today's talk with. For many, the thoughts and decision-making surrounding returning to work can be very complex. Perspectives on if, how, and when to return to work will differ from person to person. Although one may feel quite motivated and even inspired to return to work after the cancer experience, the idea to return to work immediately after this post-cancer journey phase may simply seem overwhelming and bring about anxious and worrying thoughts. Thoughts and questions such as, "Am I ready to return to work after all I've been through?" or "Can I do the job like I did before?" are common and expected.

For some who may experience financial burdens, these individuals feel compelled to return to work with thoughts of, "I have to get back to work," and feel like that's the only option is to return to work immediately even if not ready. Yet others may ask themselves, "Should I work full- or part-time? How can I return to work?" Or, "Can I return to that same busy schedule as I had engaged in before?"

Finally, some may wonder if that same job is right for them after all one has been through. Again, these are very normal, common, and expected thoughts and questions regarding return to work that the individuals certainly may hold after the cancer experience.

Claire Smith: Wonderful. Thank you for that overview. And next, you touched on some concerns, but I'd love to hear about what concerns someone might have about returning to work after cancer. Let's go to you, Ms. Rosenfeld.

Shelly Rosenfeld: Well, one concern for someone returning to work, it could be either, of course, returning to their job, but it can also be returning to work and starting a new job. And that might be when one might need to perhaps take additional days off, and whether it's for treatment or follow-up care or perhaps just monitoring as well. But to use up those sick days and then to need additional sick days, there is protections out there such as Family and Medical Leave Act, or FMLA. But a concern for someone starting a new job is, in order to be covered by FMLA or the Family and Medical Leave Act, someone has to have worked for the employer for a total of 12 months and have worked at least 1,250 hours in the last 12 months, which comes out to a little more than part-time. But that is certainly a concern because taking time off whether to care-- actually, it could also be a caregiver taking care of someone with cancer, that they need to have worked for that employer for at least 12 months.

Later, I think we might be talking about one way to work with the employer in terms of - just to kind of hint with the Americans with Disabilities Act - kind of a creative way to ask for additional time off and to see if that can work out with the employer. So I want to wait until we talk about that a little more in depth, but I just want to say there is hope and there is something that perhaps can be worked out with your employer if there is that concern. But I just want to say that while FMLA, and just to kind of briefly touch upon it, it allows certain employees to take up to 12 work weeks per year to take care of oneself or certain family members with a serious health condition. For example, that could include a spouse, parent, or child. So it is unpaid, but one's job has to stay open for that person until the end of that 12-week period, and the employer has to keep providing health benefits. So it's something to keep in mind if somebody is returning to work and is at their job now for some time and needs to take those days off. Beyond those sick days, there are protections out there.

But if they're just returning to work and they haven't been at a job for that long, then they should consider, "OK. Maybe the state has additional protections that the federal law does not have," or to think about-- and we'll talk about reasonable accommodations in Americans with Disabilities Act in a bit, I think, as a solution. So with every challenge, I think there is some kind of option, but that is certainly a concern.

Claire Smith: Yeah. Absolutely. I think it's so important to sort of think about these concerns as people are going to worry about them, but there are ways to sort of address and hopefully cope with them. Dr. Hlubocky, do you have anything else to add?

Dr. Fay Hlubocky: I agree, many survivors we know with cancer do desire to return to work. Just recognizing the fact that holding a job provides a routine, a schedule, freedom, income, meaning, it makes us feel fulfilled, it gives us a sense of purpose, and work specifically for survivors can bring a sense of normality, especially after that cancer experience. Yet for others, we know that the thought of returning to work can be very concerning. Folks might be worried over their energy and their endurance and ability to really perform at their job due to continuing or existing cancer-related or treatment-related symptoms, such as fatigue or insomnia or pain. Others may worry about colleagues' attitudes and relationships, concerns and fears over if colleagues will judge them for their appearance or their performance may arise. As well, many survivors question, “How will I be treated?” or “Will they work with me as they did before?” These are also frequent and commonly held concerns by many patients and survivors.

For all survivors, it's important to recognize that this is a new normal, a new phase in this journey post-cancer and cancer treatment that can really bring a new perspective with greater meaning and purpose. This new perspective - really, this growth - can be a motivator and inspire not only you in the work environment but your colleagues as well.

Claire Smith: So talking about maybe some of the things that we can share with our listeners to help assuage some of these concerns that they may have. I want to start, if someone is applying for a new job after cancer treatment, maybe they've been out of the workforce for a little while while going through cancer and its treatment, are there any legal protections available to them during that process, Ms. Rosenfeld?

Shelly Rosenfeld: There are. So I briefly mentioned the Americans with Disabilities Act, or ADA, which is a federal law that makes it illegal for employers with 15 or more employees to discriminate against, and it includes qualified job applicants or qualified employees with disabilities in any stage of the employment process. So that includes the interview process. A lot of people don't know that before someone even starts working, that they do have those protections. So that is really important for someone to keep in mind as they go through the interview process.

So an employer is not allowed to ask about a job applicant's medical history, whether they've taken any leave in the past, or whether they expect to take leave. The only 2 questions related to disability or cancer that employees are allowed to ask are, "Are you able to perform the essential job functions?" and "How will you perform the essential job functions?" So, in order for someone to receive protection under the ADA, they have to be able to do the essential job functions.

For example, without anyone knowing me, I don't have experience playing football. So, I do not have the ability currently to do the essential functions of being an NFL football player, not at this time and not in the past, so far. So, for example, the ADA, no matter what, wouldn't protect me because I can't do those job tasks. But if someone can do the essential functions of a job, right, they're applying for it, hopefully they're able to do those essential functions, if they have cancer or are affected by the effects of cancer treatment, they could be protected. So it is really important to keep in mind during that job application process, the employer can't ask if you're disabled. I know that sometimes they'll have things on the end of an application, but those are optional, right? So someone does not have to answer that, but they can ask, of course, if you can do the essential functions of the job. And so, yeah, I think that's just something to really keep in mind as someone's going out through that process.

Claire Smith: You talked a little bit about the ADA and how we can use those protections. And a lot of people with cancer, they may have mental changes like brain fog or even physical changes, fatigue, or other side effects, long-term side effects of their cancer and treatment, where they might need some accommodations to be able to accomplish those essential job functions that they can do. Can you talk a little bit about what that process looks like to ask for those accommodations?

Shelly Rosenfeld: Just to recap, cancer, the effects of cancer can be a disability under the Americans with Disabilities Act. I know for some people affected by cancer, thinking of the word “disabled” as it relates to cancer might be just a new way to think about it. So I'm only talking legally. So somebody might have been in the best health of their life and been in the best shape and then they're affected by cancer, and then the law may consider them as disabled. So we're talking about disability in terms of the legal definition for the Americans with Disabilities Act.

 So let's talk about reasonable accommodations. So as you mentioned, of course, the effects of cancer can be a disability because they might substantially impair major life activities such as eating, sleeping, concentrating. And so reasonable accommodations can range anywhere from making changes to a physical environment, such as moving file drawers to a more accessible location, or changes to the way that someone works. For example, teleconferences into meetings rather than in person.

Whether an employer has to give someone the type of accommodation they're trying to get depends on whether giving it would be an undue hardship to the employer. Being an undue hardship usually means practically that it will cost the employer too much to give someone the accommodations, so what costs too much really depends on the specific job and the specific employer at issue. So, for example, what might be easy to do for one employer may actually be really difficult for another, but we usually ask for folks to ask for accommodations before their work performance starts to suffer. So if your performance suffers at work, an employer may take negative action against you if they don't know you have a disability or a need for accommodation. So if an employer sees someone sleeping at their desk, they can be fired. So if the employee decides to ask for a reasonable accommodation under the ADA and tells the employer that they have fatigue from cancer treatment and need more frequent breaks due to fatigue before the employer has a chance to see them sleeping on the job, the employee has more protection at work.

It is a personal decision, and I just want to touch upon this because this question sometimes comes up where people say, "Should I talk to my employer or not?" I know, the CLRC, we don't take a position, yes or no. It is completely that person's decision, and I would respect someone either way. So that might on the one side be a little nerve-racking, but it could also on the flip side be reassuring. But there's no wrong choice. It's best to do what is best for that person. I do recommend, however, if you do want to have that discussion with your employer, if you can find someone trusted, whether it's a parent or a friend or just even a doctor or patient navigator, and try to have that conversation, because it can be difficult talking to an employer about that. Even if you feel like you really have a good relationship with that employer, it is still a different type of discussion. And I just want to also mention that it is an interactive process. So suppose someone asks for accommodation, a reasonable accommodation under the ADA, and the employer says, "This is not something that we can do. It's going to cost too much. It's not practical." Then hopefully they come back with something and say, "How about this option?" And then the employee could say, "It still doesn't really help what is the ultimate challenge here. How about this?" And hopefully it's both sides working together in the interactive process. Now, of course, if someone asks for a reasonable accommodation, it may very well be granted in its original request. But just to keep in mind that if an employer pushes back, it is designed to be reasonable for both sides.

And just to give an example, because I think it could be hard when someone says, "It depends on the employer. It depends on the employee." Right? So many people have such different jobs and employers are also so different, but here's an example. Suppose, for example, someone is a cashier, and they have to interact with people. They have to ring them up and take money and work at the cash register, but they're going through cancer treatment. And they're still able to work, but they do need a reasonable accommodation. So, for example, they might ask for a stool to sit between helping people. So if there's not someone else next in line, they can at least sit down. Giving them a separate office with a gold chair might not be reasonable, because they actually have to be there to help folks, but a stool doesn't take too much space, gives someone the opportunity to sit down, could very well be reasonable. So that's just kind of a way to think about it as an example.

And I think the doctor or also patient navigator team can be partners in this. You can ask, "When someone has this treatment, what side effects can I expect? I do this as my job. Have you had patients like this in the past? What are some things that might have helped them?" And you just start that conversation going and also think about your job and how you go about your job and what might help, or how you're feeling and what could really make a big difference. It might be that snacks are not allowed at the desk, but having a snack and being able to eat it can really combat nausea. It can also be more than one accommodation. There might be more than one side effect that needs to be addressed.

So it is something to keep in mind. Be aware of yourself and what helps you ultimately succeed so you can keep having that income, keep having that job, and hopefully keep having that health insurance. Of course, there's the FMLA protections if someone needs to take that time off, but that is something to keep in mind. And because I promised this, I just want to raise it now, is that if someone is not eligible for FMLA based on they haven't worked at their job long enough to qualify and there's no additional state protections that apply, they may be able to ask for some additional time off under the Americans with Disabilities Act beyond their sick days. Saying, "I don't know when I'll get back," and kind of an indefinite time of leave, that might be harder to get approval for as a reasonable accommodation. But saying, "I need X number of days, and then I'll check in with you about that." Or, "I need X number of days," might be something that the employer might be more willing to work with that person. So like I said, there is something to be worked out potentially.

Claire Smith: Oh, wonderful. Thank you for outlining all of that. I think that's really helpful to sort of understand what that process looks like, what maybe some reasonable accommodations are, and the fact that it is sort of an interactive process.

So another thing that Dr. Hlubocky mentioned earlier as maybe being a concern is how to talk to coworkers. Are there questions that coworkers might have after you've been out for cancer treatment, how to manage perhaps uncomfortable conversations. Can you talk about some of the ways that someone with cancer can kind of help prepare mentally for those kinds of conversations, Dr. Hlubocky?

Dr. Fay Hlubocky: Reactions will be different, and they'll vary from person to person, colleague to colleague. Some colleagues will be supportive, know when to ask or not to ask questions, and these colleagues will also try to be helpful with tasks as you return to work. Yet others might be very avoidant because they simply don't know what to say, and that can be hurtful because we all want to feel supported by our colleagues, especially after an experience like cancer. Therefore, it's important for you to prepare and plan on what you want to say before you're returning to work.

Honestly, there's really no right or wrong way to address this, as everybody deals with the cancer experience differently. You may desire to talk openly about the cancer experience, or you might wish to simply move on in order not to be treated differently by colleagues. Empowering yourself by setting boundaries on how to address these questions is key. For example, you can thank your colleagues for their concerns. However, express that, for you, now is not the time or the place to discuss your experience. Remember, you have to feel comfortable and safe in discussing your experience.

Accept help if offered, especially in the initial stages of returning to work. Also, it's important to be prepared that some relationships may change. For example, those who were supportive and close to you before the cancer may distance themselves afterwards. You will learn who you can count on, and that is what's important. If you do feel comfortable, talk to your supervisor regarding any concerns that you may have about returning to work and addressing colleagues' questions so the supervisor can also help prepare the staff as well. But, again, only if you are comfortable. Be sure to check in with your supervisor, especially if you feel that the work environment is not supportive.

Claire Smith: Wonderful. Great advice. And working can sometimes be stressful under the best of circumstances, and especially if you've gone through cancer treatment, you're maybe starting a new job or returning to a workplace. What are some tips for coping with some of those emotions and stresses that might arise?

Dr. Fay Hlubocky: First and foremost, it's talking with your oncology team about when is the best time to return to work given your specific phase in the cancer survivorship journey, as well as inquiring about symptoms that you may have, like fatigue or cancer-related cognitive dysfunction and any other worries or symptoms that may interfere with returning to work. We want to be sure that you're physically healthy to return to work, and be sure to talk to them about any fears associated with working. Remember, we, your cancer team, are here to help you. Also, knowledge is power, and thus education on what is needed or how to return to work after cancer, taking into consideration life changes and symptoms can help to alleviate some of this distress. Also, again, if comfortable, talk to your supervisor about your options and to determine a plan. With the change in work environment, you may have the option to return slowly, gradually to the work environment first, maybe virtually, then part-time with fewer hours and gradually full-time. Again, if comfortable, talk to your supervisor about any time and work accommodations you may feel.

Planning this return to work in partnership with your supervisor can really help you prepare as well as address any worries and anxieties you may hold. If the stress and the anxiety associated with returning to work is just really simply too overwhelming, talk to your therapist to help you plan to return to work. If you're not already connected to psychosocial support, engaging in the service can be a really valuable tool to help you determine your readiness to return to work. A psychologist, a social worker can really help you with preparing and problem-solving and planning when or if returning to work is an option now or in the future. Cognitive behavioral therapy, or CBT, is a research-based psychotherapy that we use that can help to address anxious and worried thoughts that you may have. And the goal of CBT is really to learn to control, challenge, and overcome distressing thoughts and beliefs about returning to work and helps you learn skills to really change your behaviors.

It's also OK to realize that your job is now not right for you. Remember, a comprehensive plan in collaboration with your doctor, potentially your supervisor and psychosocial support, can really help prepare you, empower you as you begin the process of returning to work.

Claire Smith: One other thing I wanted to touch on a little bit is issues around workplace discrimination. If someone is worried that they might face workplace discrimination after cancer, are there any resources available to them, Ms. Rosenfeld?

Shelly Rosenfeld: Yes. If someone believes they've been discriminated against in the workplace or have questions about anti-discrimination protections, first of all, the Cancer Legal Resource Center, or CLRC, we have handouts on our website about someone's right to be free from discrimination in the workplace. Our website is thedrlc.org/cancer, and we recommend that someone speak with an employment attorney to discuss their legal options if someone thinks that they've been faced with discrimination. Someone also might want to file a complaint with the Equal Employment Opportunity Commission, or EEOC. The person can bring a claim for a violation of the Americans with Disabilities Act, or ADA, file a complaint with their state fair employment agency - of course, that depends on the person's state, where they live and work - or file a lawsuit against their employer. So, there's also an organization called the Job Accommodation Network, or JAN, which is a service of the U.S. Department of Labor's Office of Disability Employment Policy, where someone can learn more about resources available to them.

So certainly, there are different options. We hope that no one experiences discrimination because of cancer, their history of cancer, an association with someone with cancer. Hopefully, no one ever experiences that. But if they do, hopefully they feel empowered already that there are options out there for them to assert their rights and hopefully ensure that others in the future will be free from discrimination as a result of cancer in the workplace.

Claire Smith: Thank you for sharing those resources. Absolutely. Do either of you have any final thoughts before I let you go today or anything else you wanted to touch on for our listeners?

Shelly Rosenfeld: I just want to say that, at times, it can be overwhelming, in addition to having a cancer diagnosis, to encounter so many different legal issues that are kind of these non-medical side effects of cancer. And I just want to say that at the Cancer Legal Resource Center, and I know that patient care teams really do care about keeping someone informed of their rights, and so it is important to know that there are rights out there and not to be hopeless about their rights because there might be things that you just never knew were possible. But just by making that effort to learn more about what's out there and what you might be entitled to, whether it's a health insurance appeal, whether if someone has to take a longer time off their job more than a year because of cancer, that there are income replacement options potentially through Social Security, that there are just health insurance options potentially out there for them, that there is hope and it is worth trying. It is worth appealing. And to work with your doctor and medical team saying, "Can you give me a letter? Can you write this for me? Do you have something that you've submitted for someone else for appeal for this medication or for this type of treatment?" And try to seek support in a practical way to stand up for yourself because the results and the upside of doing so are so important.

So I just hope that someone comes away with this knowing-- you don't have to memorize or take notes or be an expert to know this after this podcast, just know that it's out there and that there are resources, and you can learn. And what the CLRC does, we do free. So just to know that there is something out there for them.

Claire Smith: Wonderful. Great message.

Dr. Fay Hlubocky: That's great, Shelly. Thank you. I've learned so much from this podcast. And to all the Cancer.Net audience out there, whether you're a patient or a caregiver or even part of the team, please know that we're here to help you in any capacity. Don't fight this alone, have self-compassion, be patient with oneself. This process does take time, and there's lots of resources here to help you to decide if returning to work is right for you now or in the future. Again, we're here to help you.

Claire Smith: I love that. Thank you. And thank you both so much for sharing your expertise today. It was really wonderful having you, Dr. Hlubocky and Ms. Rosenfeld. Thanks for joining us.

Shelly Rosenfeld: Thank you.

Dr. Fay Hlubocky: Thank you so much. It was an honor and a pleasure to be with you all. Thank you.

ASCO: Thank you, Dr. Hlubocky and Ms. Rosenfeld. You can find more resources and information about life during and after cancer treatment at www.cancer.net/survivorship.

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In this podcast, members of the Cancer.Net Editorial Board discuss the latest research, innovations, and discussions taking place across the field of genitourinary cancers, including prostate cancer, bladder cancer, kidney cancer, and testicular cancer.

This podcast is led by Cancer.Net Associate Editor for Genitourinary Cancers, Dr. Petros Grivas. Dr. Grivas is the clinical director of the Genitourinary Cancers Program at University of Washington Medicine and a professor in the clinical research division at the Fred Hutchinson Cancer Research Center. He is joined by Dr. Neeraj Agarwal, Dr. Shilpa Gupta, Dr. Tian Zhang, and Dr. Timothy Gilligan.

Dr. Agarwal is a Professor of Medicine, and a Presidential Endowed Chair of Cancer Research at the Huntsman Cancer Institute at the University of Utah. He directs the Genitourinary Oncology Program and Center of Investigational Therapeutics at the Huntsman Cancer Institute. He is also the Cancer.Net Specialty Editor for Prostate Cancer.

Dr. Gupta is the Director of the Genitourinary Medical Oncology Program at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. She is also the Cancer.Net Specialty Editor for Bladder Cancer.

Dr. Zhang is an Associate Professor of Internal Medicine at UT Southwestern Medical Center and a medical oncologist at the Harold C. Simmons Comprehensive Cancer Center. She is also the Cancer.Net Specialty Editor for Kidney Cancer.

Dr. Gilligan is a Medical Oncologist, Associate Professor of Medicine, and Vice-Chair for Education at the Cleveland Clinic Taussig Cancer Institute. He is also the Cancer.Net Specialty Editor for Testicular Cancer.

 View full disclosures for Dr. Grivas, Dr. Agarwal, Dr. Gupta, Dr. Zhang, and Dr. Gilligan at Cancer.Net.

Dr. Grivas: Hello. I'm Dr. Petros Grivas. I'm a medical oncologist in Seattle, a professor at the University of Washington and Fred Hutchinson Cancer Center. I'm really excited and thrilled today to host wonderful superstars in the field of GU Medical Oncology who will share insights about the highlights of kidney cancer, prostate cancer, and bladder, urothelial, urinary tract cancers that happened in 2023. And this highlight aims to inform our great audience about what are the clinically relevant insights, what patients should be aware, what patients should ask for when they go to the clinic, or overall, how they can be most well-informed and have the necessary tools to improve their care and feel well-supported in regards to education. So without further ado, we're going to cover in first prostate cancer, a very important update in this year. So all the people out there that are interested in hearing about prostate cancer will find this very, very useful and insightful. I'm very excited to host Professor, Dr. Neeraj Agarwal from University of Utah. Neeraj, do you want to introduce yourself?

Dr. Agarwal: Of course. It's such an honor to be here. My name is Dr. Neeraj Agarwal. I'm a professor of medicine and director of genitourinary oncology program at the University of Utah Huntsman Cancer Institute.

Dr. Grivas: Neeraj, thank you so much for accepting the invitation and being with us. I would like to ask you, what's your take on the current state of genetic testing in patients with prostate cancer? And when we say genetic testing, maybe you can clarify the distinction between germline and somatic and comment on both if you could. Thank you.

Dr. Agarwal: Of course, a very important topic. I must tell you that it is very clear from all the guidelines that in patients with advanced prostate cancer or metastatic prostate cancer, meaning when prostate cancer has spread to different parts of the body, both germline testing to look for hereditary mutations in the DNA repair genes and testing for the same genes inside the tumor tissue are considered standard of care. So, a patient with advanced prostate cancer should have germline testing and somatic tumor tissue testing to look for mutations that can predispose them to have prostate cancer, and if they have genes in the tumor which can be targeted by the current approved drugs, like drugs which are already approved right now or which are in clinical trials.

Unfortunately, less than 50% of patients in many areas of the country and in the world, less than 20% of patients are being tested. And even more, unfortunately, patients are less likely to be tested are those who are not well-resourced, who are not living in rich countries, if you will. They are poor- or low-resourced countries. Even with high-income countries, within those countries, patients who are living in relatively not-so-affluent neighborhoods, they are less likely to be tested. From racial perspective, patients who are Black or who are Hispanics are less likely to be tested. Based on how many drugs are out there in the clinic and emerging through clinical trials. And the fact that we can use many of these mutations for prognostication, to inform survival, to inform aggressiveness of the disease. It is not only to treat those patients, but also how to monitor the disease. The genetic testing is very important.

Dr. Grivas: Thank you so much, Neeraj. It's very insightful. And I think you did a great job outlining the clinical relevance for both the patient in terms of treatment decision-making and therapy options, especially for advanced prostate cancer, as well as the broader family and implications for cancer prevention and cancer screening for the broader family members. So definitely a very important topic.

Neeraj, the other question I have, if you could tell us more about this class of medications called PARP inhibitors. If you can comment on the currently approved PARP inhibitors, either as a single agent, what we call monotherapy or combination therapies for patients with prostate cancer in the United States, and who is eligible to receive those therapies?

Dr. Agarwal: And this is such a nice segue to talk about PARP inhibitors as we were just talking about genetic testing of prostate cancer. So, PARP inhibitors are a class of drug which are instrumental, critical in treatment of patients who harbor mutations in those DNA repair genes. And two monotherapies, meaning using these PARP inhibitors as single agents have been already approved in the United States and several other countries. These are olaparib or rucaparib. Olaparib is approved after patients have had disease progression on novel androgen-blocking therapies or androgen blockers such as enzalutamide or abiraterone or apalutamide. And these PARP inhibitors such as olaparib or rucaparib can be used for those patients as single agent if they have these DNA repair mutations. Now, last year, we saw several combinations of PARP inhibitors with these androgen or novel hormonal therapy, as we call them. And these include abiraterone plus olaparib, abiraterone plus niraparib, and talazoparib plus enzalutamide from various phase 3 trials. Now, I'd like to bring to your attention that these PARP inhibitor combinations are approved with different indications in the United States and in the European Union. And they continue to get approved in various other countries.

So the combination of abiraterone and a PARP inhibitor, whether it is olaparib or niraparib, they are approved for patients who have new metastatic castrate-resistant prostate cancer, and they have BRCA1 or BRCA2 mutations in the cancer cells or they have germline BRCA1 and BRCA2 mutations. Enzalutamide and talazoparib combination is approved in the United States for patients with metastatic castration-resistant prostate cancer with BRCA1 and BRCA2 mutations, but also several other DNA repair gene mutations. And that's a big difference as far as approval is concerned in the U.S. In the European Union, for our patients who are listening from European Union, the combination of abiraterone and olaparib and enzalutamide and talazoparib are approved for patients with metastatic castrate-resistant prostate cancer where chemotherapy is not clinically indicated, regardless of whether they have mutations in the DNA repair genes or not. And the combination of abiraterone and niraparib is only approved for patients with metastatic castrate-resistant prostate cancer with BRCA1 and BRCA2 mutation. So I just wanted to outline the different indications in the United States and in the Europe.

Dr. Grivas: Thank you so much, Neeraj. So eloquent and very relevant to multiple patients globally, as you pointed out, with some differences in terms of the regulatory approval and availability of those agents in different countries. So great insights. Maybe we'll ask you 1 more question again since we are doing the highlights of the year.

Another very important area of therapeutic development has to do with these novel agents that target the prostate cancer cells, and we call them theragnostics as a broader term. And I will let you explain what that means maybe in lay terms for our audience. And specifically, if you can comment on the recently presented PSMAforetrial at the ESMO meeting in Madrid with lutetium-177 PSMA. What are the implications of these results for our patients, and what is the role of lutetium therapy in this particular therapy setting?

Dr. Agarwal: Of course, very important and pertinent topic indeed. As our patients may know that lutetium-177 therapy, or simply speaking, lutetium therapy, has already been approved for patients with metastatic castrate-resistant prostate cancer who have had disease progression on this novel hormonal therapy and a chemotherapy with docetaxel or cabazitaxel. And this indication is already there in the U.S. and in various other countries. And patients are eligible to receive lutetium therapy as long as their disease has progressed on docetaxel or one of the taxane chemotherapy and a novel hormonal therapy.

Now, in the European Society of Medical Oncology meeting, Dr. Oliver Sartor presented the data on PSMAfore trial where lutetium therapy was used before chemotherapy. In this trial lutetium therapy was compared with another novel hormonal therapy after disease progression on 1 novel hormonal therapy. And there was approximately 6-month improvement in progression-free survival, meaning there was a delay in disease progression by 5 to 6 months in patients who were receiving lutetium therapy. And at the time of the report, there was no improvement in overall survival, with the caveat that 84% patients who were receiving novel hormonal therapy, actually, they switched over to lutetium therapy after disease progression. So, overall, survival data may not be met. Having said that, we already know that lutetium therapy is an effective therapy, and it has a definitive role in treatment of our patients with metastatic castrate-resistant prostate cancer.

Dr. Grivas: Thank you, Neeraj. That's very, very important data. And I'm so glad we have many more therapy options for our patients with prostate cancer. So involvement and accrual in clinical trials, I'm sure you will agree, is a very important and high priority. And I always encourage people with prostate cancer to ask about clinical trials that are relevant to their situation.

Dr. Agarwal: Yeah. I'd just like to add a point regarding lutetium therapy that there was a phase 2 trial in from Australia which compared lutetium therapy with cabazitaxel therapy after disease progression and docetaxel chemotherapy. And efficacy of both agents were not very different. So just wanted to make that point.

Dr. Grivas: Thank you, Neeraj. It's a very important point. And obviously, always want to think about pace and preference, convenience, distance from the cancer centers, all the relevant points, how we can individualize suggestions or recommendations for our patients. Thank you so much, Neeraj, for your wonderful input, insights, and all the work you do in the field.

Dr. Agarwal: Thank you very much for having me.

Dr. Grivas: Of course, of course. And now we're going to transition to a different cancer type. We're going to talk about bladder cancer and urothelial cancer in general, urinary tract cancer. And we're delighted and excited to have Dr. Shilpa Gupta from Cleveland Clinic, who's a professor there of oncology. Shilpa, I want to introduce yourself?

Dr. Gupta: I'm Shilpa Gupta. I'm a genitourinary medical oncologist and the director of the GU Program at Cleveland Clinic. I'm really excited to be doing this podcast with you all.

Dr. Grivas: Thank you, Shilpa. You have done amazing work in the field, pushing the field forward. You are part of those transformative studies. I will ask you in the beginning where I'm going to focus my first question for people who have advanced or metastatic bladder cancer or urinary tract cancer or upper or lower tract. And we saw really exciting, impressive data at the recent ESMO Congress in Madrid a couple of months ago. And I know you were there and were enjoying to see the improvement in patient outcomes that comes with better quality of life for patients in the last several years. And the question I have for you, if you want to summarize the key data in the first-line treatment, patients who have no prior treatment for metastatic urothelial cancer, what are the key data we showed at the ESMO meeting?

Dr. Gupta: Thank you, Petros. As you said, this is a really exciting time for both patients as well as the physicians treating bladder cancer because of all the new developments which we've seen after decades. So at ESMO 2023, we saw the key data from the EV-302 trial, which was a phase 3 trial, which randomized patients to the standard of care, platinum-based chemotherapy, gemcitabine-cisplatin or gemcitabine-carboplatin, versus a novel drug, which is an antibody-drug conjugate called enfortumab vedotin and the immunotherapy pembrolizumab. And the primary endpoint was to see if patients lived longer and this delayed progression. And we saw that in this the progression-free survival, we saw that it was 12.5 months with enfortumab vedotin and pembrolizumab compared to 6.3 months, which means that the risk of progression or death was decreased by 55% with this new combination. And the benefit was seen across all the various factors, especially patients with liver metastases, visceral metastases, whether or not they had contraindications to receiving cisplatin or not or PD-L1 expression. So this is the first time we saw such a remarkable benefit with any treatment that beat platinums. And the overall survival was also doubled: 16 months in chemotherapy versus 31.5 months with this combination. So the risk of death was reduced by 53%. And we also saw that the overall response rates were 68% with this compared to 44% with chemo. And 29% of patients had complete responses. And this was really remarkable because we have not seen such data before.

And in the same session, we also saw another phase 3 trial that was presented, which was the Checkmate 901 trial, in which the investigators tested whether the addition of immunotherapy called nivolumab to the standard of care, gemcitabine and cisplatin was better than gemcitabine and cisplatin alone. So this was a study only looking for patients who can receive cisplatin.

So patients were randomized to 6 cycles of gemcitabine cisplatin versus nivolumab, gemcitabine cisplatin for up to 6 cycles. And after that, they continued nivolumab maintenance every month for up to 2 years. And in this, the primary endpoint of overall survival was also met, although the difference was not as huge as the other study. It was 18.9 months with chemotherapy versus 21.7 months with the combination. And progression-free survival was also improved by just 0.3 months with the combination. And the objective response rates were higher with the combination, 57% versus 43%, and there were 21% complete responses.

So the bottom line is that both these trials showed us that the frontline treatment is not going to be just platinums anymore moving forward. We will have the option of the enfortumab vedotin and pembrolizumab for all comers, patients who can get platinums, and nivolumab and gemcitabine cisplatin for patients who are cisplatin eligible.

Dr. Grivas: Thank you, Shilpa. Wonderful summary. Really, really exciting time to see the field moving forward and translate those results to longer life for our patients. In that context, I will also ask you—I asked Neeraj before about genetic testing in prostate cancer. I will ask you a similar question about genetic testing in bladder cancer. Again, reminding the audience about the distinction between germline testing, which is the DNA we are born with, and somatic testing, which is the cancer-specific genomic changes. Could you comment on the importance of genetic testing in bladder cancer?

Dr. Gupta: Yes. Absolutely, Petros. Genetic testing in urothelial cancer is very important because for the first time a few years ago, we saw a drug targeting the fibroblastic growth factor receptor or FGFR alterations. This drug is called erdafitinib. It is the first targeted therapy to be approved in urothelial cancer. It is only seen in up to 20% of patients who harbor these alterations for whom this option may be viable. And we saw initially that erdafitinib was approved in patients who harbor these alterations in the phase 2 BLC2001 trial where it showed response rates of 40% and encouraging progression-free survival, and overall survival. And then we also saw in a phase 3 trial called the THOR trial where patients who harbored these alterations by genetic testing, erdafitinib was much better than chemotherapy, prolonged survival by almost 4.2 months compared to chemotherapy. So unless we are testing, we won't find this. So it is really important to test all our advanced disease patients so we are not depriving them of this additional targeted therapy.

Dr. Grivas: Thank you, Shilpa. Very important message for our patients to definitely discuss the value of genetic testing. And if we think about therapy implications, specifically genomic changes, DNA changes in these FGFR-2 and FGFR-3 genes are very relevant and important for potential therapy with this agent called erdafitinib. Shilpa, a quick comment. We saw data from THOR cohort 2 comparing erdafitinib with this inhibitor of this FGFR that we just talked about compared to pembrolizumab, which is an immunotherapy drug inhibiting a checkpoint of the immune system. Could you quickly comment on that? And I think both options are available for our patients and sometimes just comes down to the sequence based on a particular patient case.

Dr. Gupta: So Petros, as we had thought that patients who harbor these alterations in their tumors, they may benefit from using targeted therapy before immunotherapy. That was the premise of the cohort 2 of the THOR trial, that patients will do better if they received erdafitinib first after progressing on 1 prior line of therapy, which is not an immunotherapy. So patients were randomized to erdafitinib versus pembrolizumab. Of course, all of them had to have the FGFR alterations. The primary endpoint was overall survival. Initially, like I said, the study assumed that there'll be 46% improvement in overall survival with erdafitinib over pembrolizumab. However, the study was a negative study. There was no difference in the overall survival. And what that means for our patients is that erdafitinib right now is positioned for patients who've had prior platinums and immunotherapies. So erdafitinib should not be used before immunotherapy. So I think this is the first study that really settles the question of sequencing for our patients. And I think the message is that in a patient's journey, they should be getting all these therapies. We just now know that it's better to use pembrolizumab before erdafitinib and not vice versa.

Dr. Grivas: Thanks, Shilpa. And then really, really interesting to see these trials being reported. And as you said, individual discussion with the patients and the response rate may be another factor to consider. If someone wants to have a more rapid control of the cancer of the disease, we may potentially think about an agent with high response rate and vice versa. So I think to your point, individual decisions. And I think patients asking those questions is very important in the clinic to help select the right patient for the right treatment for the right patient.

Dr. Gupta: Yeah. Absolutely, Petros. They did see that the response rates were 40% with the erdafitinib versus 21% with the immunotherapy. So using that information can sometimes guide us if a patient has high disease burden.

Dr. Grivas: Thank you, Shilpa. That was very insightful. And thank you for all you are doing for the patients and the field in general. You really, really have helped the field move forward. So congratulations and thank you. And we're going to transition to another superstar in the field of GU cancers. Very excited to host Dr. Tian Zhang. Dr. Zhang is in UT Southwestern in Dallas. Tian, you want to introduce yourself?

Dr. Zhang: Hi, Petros. Thank you so much. Tian Zhang, I'm a GU medical oncologist and associate professor at UT Southwestern Medical Center in Dallas.

Dr. Grivas: Wonderful. Thanks, Tian. Again, the same comments. All the work you're doing in the field is tremendous. Thanks for joining us today. Tian, we saw some very interesting data at the ESMO meeting. And since we're doing the highlights of the year, I think the predominance of the data we saw at the ESMO meeting was about this drug called belzutifan, where I will ask you to enlighten us what exactly this is. And particularly, we saw 3 different trials. I would probably ask you to focus more on the LITESPARK-005. What was the trial design and what was the primary goal of the study? When patients go on this drug, what they should be aware in terms of side effects? And what was all this discussion that the take-home message at the end of ESMO regarding belzutifan? Thank you.

Dr. Zhang: Sure. We’ll parse that one at a time. Belzutifan, I hope many of our audience knows is a small molecule inhibitor of the HIF complex, a hypoxia-inducible factor complex, which is implicated in the development of kidney cancers. And this biology actually contributed to the Nobel Prize in 2019. Understanding the structure of the HIF complex and how to target it. For a long time, HIF was thought to be un-targetable. And so the fact that there were small molecules identified actually here in Dallas at UT Southwestern that inhibits the dimerization of the HIF complex is really novel and shows us the bench-to-bedside translatability of these preclinical discoveries.

And so there were a couple of molecules that were discovered here on campus and they paved the way for what became molecules that have now made it to clinic, in particular belzutifan. And so we've had belzutifan now approved for Von Hippel-Lindau Syndrome over the last 2 years or so. So many of us are familiar with using this drug in the clinic. It's an oral agent that's able to target the HIF complex and block it and really control the spread of clear cell kidney cancers, in particular in Von Hippel-Lindau disease. 

LITESPARK-005, the trial that you're alluding to, there was a registrational trial for belzutifan across other kidney cancer populations. And this trial was the 1 that made, I think, the biggest impact of the 3 trials that were presented at ESMO this year.  LITESPARK-005 was a phase 3 trial of patients who had metastatic or locally advanced clear cell kidney cancer who had progressed after prior systemic therapies, not more than 3 prior lines. And they were randomized to either belzutifan at the 120 milligrams daily dose or everolimus at the 10 milligrams daily dose. And the primary endpoint was delay of progression. So progression-free survival as well as overall survival. So we saw the primary endpoint of these was met for progression-free survival.

There was about a 26% risk reduction for progression for patients treated with belzutifan versus those that were treated with everolimus. The objective response rate I would highlight is also significant for the patients treated with belzutifan. There was actually a 3.5% complete response rate and objective responses. So including partial responders was about 23%.

I would say that patients who are treated with belzutifan need to be aware of the side effects of anemia and also hypoxia [low levels of oxygen in the body]. And in fact, higher grades of anemia can occur in up to a third of patients and higher rates of hypoxia. So low oxygen saturations can occur in up to 10% or so of patients. And so that's really important when we're thinking about those toxicities and how we might hold or support the side effects with growth factors, for example, for the anemia. Otherwise, it's quite well tolerated as a single agent.

As you alluded to, there was 1 controversial aspect of this particular trial because the control cohort was treated with everolimus. And everolimus as a single agent may not be what people use at this point in the refractory setting. But it is an acceptable approved treatment option for patients in the refractory kidney cancer setting, and therefore, it was chosen as the control cohort. And belzutifan did improve compared to a known standard of treatment. So I think that's really important to add to our armamentarium in refractory disease.

Dr. Grivas: Wonderful, Tian. Thank you so much for a really, really comprehensive and detailed review. We'll have to see whether it will be available for patients with advanced clear-cell kidney cancer. To your point, it's already available for patients with this condition that you mentioned, the Von Hippel-Lindau genetic condition. So it's great to see more options available for our patients.

Maybe I'll ask you another quick trial to comment on Tian, and I'll ask you individual questions to make it easier, to your point, for the audience to follow. And I'm referring to the RENOTORCH trial. This was conducted in China, and I think it was practice-changing there. Could you tell us the study design?

Dr. Zhang: RENOTORCH was another phase 3 randomized trial. It was conducted all in China of patients with unresectable metastatic clear cell kidney cancer, no systemic prior therapy, and also intermediate- and poor-risk disease by IMDC criteria. So these were all first-line metastatic disease, and patients were randomized to either toripalimab, which is their PD-1 inhibitor, plus axitinib versus sunitinib. So this is a trial design that mirrors many of our prior trials in the first-line metastatic setting that have led to approvals of VEGF IO [immunotherapy] combinations. But this is the first one that was carried out purely in the Chinese population and important for the Chinese population to gain access to these types of combinations.

Dr. Grivas: Thank you, Tian. Very important to see this global approach, as you mentioned, oncology and see trials from different countries. What were the main findings of this trial?

Dr. Zhang: Sure. The primary endpoint was progression-free survival of the 2 cohorts. And they randomized about 420 patients. About 80% per cohort had intermediate-risk disease. And the combination of axitinib with toripalimab did improve progression-free survival. So it had a 35% risk reduction for progression over time. So it did meet its primary endpoint.

Dr. Grivas: Thank you, Tian. It's great to see progress in the field. As I mentioned, new agents, positive trials. Could you comment a little bit on the side effect profile and the significance of this trial for our patients worldwide?

Dr. Zhang: Sure. When we're talking about VEGF IO combinations very similarly as to the prior trials that we've seen in the toxicity profiles, we're thinking a lot about the immunotherapy toxicities of rashes and colitis [inflammation of the colon], endocrinopathies [hormone problems], as well as the rare inflammatory reactions of the liver, lungs, or kidney, but also added in the small molecule effects of hypertension, hand-foot syndrome, and mucositis [mouth sores] and taste changes. So very important to think through those side effect profiles as our patients are being treated with these combinations.

Dr. Grivas: Thank you so much, Tian. Great to see, again, this progress made worldwide. And I think it speaks to the idea of how we can have equitable healthcare delivery across the globe, right, and have agents accessible in different parts of the world.

Dr. Zhang: Absolutely. In fact, I would just add that the Chinese population haven't actually had access to drugs like cabozantinib. And this is their first phase 3 grade 1 evidence for a combination of VEGF with IO combination. So it's really important that these trials are carried out in the populations where we try to find the effect and see that the consistent benefit is there so that those patients have access to all of these treatment options.

Dr. Grivas: Thank you, Tian. I appreciate your wonderful insights and all your amazing contributions in the field and your research. It's really, really inspiring to see. And I'm going to transition now. Last but not least, we're having the honor of hosting professor, Dr. Tim Gilligan, who is in Cleveland Clinic, and Tim is a world-known expert in urinary cancers, including testicular cancer. Tim, would you like to introduce yourself?

Dr. Gilligan: Yes. Hi. So I think you just did. Tim Gilligan, an oncologist at Cleveland Clinic. I chaired the NCCN panel on testis cancer and edit the UpToDate sections on testis cancer with their help.

Dr. Grivas: Fantastic. Thanks, Tim, for being with us today. And all the work you have done for our patients with GU cancers, testicular cancer, and a lot of work is being done with the NCCN and other guidelines. And you are co-chairing the NCCN guidelines, to your point. Tim, a lot of discussion is happening nowadays across cancer types regarding the role of what we call biomarkers, which are potential features that can help us select patients for the right treatment or help us estimate the prognosis, how long people live. Could you comment a little bit on this biomarker called microRNA in patients with testis cancer? How do you envision this being developed in the future? Is it ready for prime time or not yet?

Dr. Gilligan: And that's an important question. It's not ready for prime time yet, but we are making progress. There are a couple of areas where it could be very useful. So for example, in stage I testicular cancer, we tell patients to go on surveillance because they're usually cured with orchiectomy [surgical removal of the tumor and testicle], but there is a risk of relapse, and that risk of relapse is highly variable. And our current risk stratification systems for predicting who's going to relapse, who has stage 1 disease, are helpful, but they're far from perfect. And so there was data presented this year that mRNA may be more accurate at predicting for men with stage I non-seminomas who's destined to relapse. And so the implication of that would be if you are positive for mRNA, this particular mRNA for non-seminoma and you have stage I disease, normal scans, normal markers, you could identify a high-risk group of patients who maybe should get a cycle of BEP chemotherapy rather than waiting. If you know they're going to relapse, you're going to have to get them 3 cycles of BEP, why not just treat them right away? Or maybe RPLND [retroperitoneal lymph node dissection] could be helpful in that setting. We don't know. But we would need to do studies validating that approach.

There is data showing that it does predict relapse, but it's not at the point of saying, "Are the patients really going to do better with immediate treatment and which treatment is going to be best for them?" But I thought that was an important finding and really an example of how we think we're going to use it, which is to find relapse a lot earlier and so that we can give a less toxic treatment. And the benefit of that is that we know more and more that chemotherapy is toxic and resulted in second cancers. For men who get multiple cycles of cisplatin-based chemotherapy, or if they get radiation therapy, they're at higher risk of dying of other cancers than the general population. So if this could help us find early relapses, treat it more gently, less aggressively, have late, less toxicity, and the same cure rate. That would be great. So we're not there yet, but I think we're going to get there.

Dr. Grivas: Thanks, Tim. Very, very helpful to know. So this microRNA 371 that we talk about is not ready for prime time, but you definitely see promise for the future, and more trials, more studies are being done. Again, illustrating the importance of clinical trials that can help us evaluate the added value of a particular biomarker, including this particular microRNA that we talked about.

Dr. Gilligan: Before you change the subject on getting to crude biomarkers, there was also an interesting abstract showing that for stage I seminoma. If we actually use our current markers, we may be able to predict much more accurately. And it'll be interesting to see if that changes. They looked at the variables of lymphovascular invasion, invasion of the hilum of the testis, whether or not preoperative markers were elevated, LDH, and beta HCG. What was interesting to me about that paper was that this is about 900 patients. It was pretty large. That if you had all 4 risk factors, the relapse rate was about 64%. Whereas your average relapse risk for stage I seminoma is about 15%. We put everyone on surveillance. If we started if that model is persuasive to the community and starts getting used, then maybe patients with those 4 risk markers who most of whom are going to relapse, according to this data, maybe you want to treat those people and not put them on surveillance. So that'll be interesting to follow up on too.

Dr. Grivas: Thanks, Tim. And you are referring to currently available blood tests, right, that can be used, and we use them in clinical practice. So we just put them together, try to get a sense of the chance of cancer coming back, what we call recurrence, and how long people may live. That can help us make a therapy decision. Thank you, Tim. This is very, very interesting. And I'm glad to see the progress in the field.

I think you alluded to that before, but there is a trend discussing when we have a removal of the testicle for a patient with testis cancer, what to do next, depending on the stage, those markers that the blood tests you told us about. What about the role of surgery for removal of lymph nodes, for example? And do you see a trend going forward that in many selective cases, certain scenarios, we may potentially select surgery as opposed to chemotherapy or radiation to avoid these potential complications down the road? And if so, which are those patients who may benefit from surgery?

Dr. Gilligan: Yeah, an important question. I think surgery, there's been a growing interest in using surgery rather than chemotherapy in order to avoid late effects. So retroperitoneal lymph node dissection (RPLND) is the most obvious example of that. There is data now showing that most patients with stage II seminoma can be cured with retroperitoneal lymph node dissection. We used to treat those patients with chemotherapy or radiation, but as I've noted, both of those are associated with an increased risk of second cancers down the line. So there are papers on both sides of the Atlantic showing that you can cure most people. However, it is important to note that the relapse rate after surgery is significantly higher than the relapse rate after chemotherapy or radiation. If you take a stage II patient and treat them with chemotherapy or radiation, you're going to cure well over 90% of them. Whereas the relapse risk with surgery, depending on what you find at surgery, is going to be higher. So on average, it's going to be in the realm of 20%, maybe as high as 30%, depending on which paper you look at. And if you take patients who have PN2 disease, so a lymph node is 2 centimeters or bigger, 25% or more of those patients are relapsing after surgery.

So it's important for patients to understand that this treatment has the benefit of avoiding chemotherapy for most patients, but it also has a higher risk of relapse than the old treatments. We still think it's attractive because if you can avoid chemotherapy in 3 out of 4 patients or 4 out of 5 patients, that's a benefit to those patients. And also, if you go in and find a significant amount of cancer at surgery, you can give 2 cycles of chemotherapy right away and almost eliminate the risk of relapse, which is less chemo than they would be getting upfront, which would be 3 or 4 cycles. So one of the emphasis now is really trying to avoid late toxicities if we can. You sometimes see that even in the metastatic setting in terms of resecting residual masses and situations where we maybe in the past would have thought about second-line chemotherapy. I think people are more thinking about opportunities to use surgery instead to try to limit the quantity of chemo that we're giving. Those are much trickier decisions than the stage II decisions, but definitely a growing interest in surgery rather than chemo.

Dr. Grivas: Thank you so much. It's really, really exciting to see that testis cancer was really transformed in the past with developments of therapies like chemotherapy, radiation therapy, and surgery. And it's great to see this evolving down the road.

And I think all of the above that you mentioned evolves through the conduction of clinical trials. And as I mentioned before, I think it's so important to give the opportunity for patients and families to review clinical trial options. I think it's critical to try to help them, but also help other patients, the community, the society in general. So I always try to underline the importance of clinical trials across the board.

And on that note, I think we had such a successful year, 2023 across GU cancers. It's so great to see the progress being made. All of us are looking forward for more exciting research being done in 2024 and beyond. And on that note, I want to thank so much Dr. Agarwal, Dr. Gupta, Dr. Zhang, and Dr. Gilligan for wonderful insights and all the great work they're doing in the field of GU cancers.

As the editor for the GU Cancers for the wonderful Cancer.Net, I'm so proud of this team and really, really looking forward to further podcasts like this and how we can better serve the educational mission for ASCO, working with the wonderful staff at Cancer.Net. Thank you so much, all of you, for your time today and all you are doing.

Dr. Gupta: Thank you, Petros.

Dr. Zhang: Thank you, Petros.

ASCO: Thank you, Dr. Grivas, Dr. Agarwal, Dr. Gupta, Dr. Zhang, and Dr. Gilligan. You can learn more about new research in genitourinary cancers at www.cancer.net.

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The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this Meaningful Conversations podcast, Dr. Richard Lee talks to Dr. Tara Sanft and Dr. Biren Saraiya about what people with advanced cancer should know, including the value of palliative and supportive care and ways to talk with their families and healthcare teams about their health care wishes.

Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations.

Dr. Lee is a Clinical Professor in the Departments of Supportive Care Medicine and Medical Oncology at City of Hope Comprehensive Cancer Center and serves as the Medical Director of the Integrative Medicine Program. He is also the 2023 Cancer.Net Associate Editor for Palliative Care.

Dr. Sanft is a medical oncologist and Chief Patient Experience Officer at Smilow Cancer Hospital, the Medical Director of the Yale Survivorship Clinic, and Associate Professor of Medicine in Medical Oncology at Yale School of Medicine.

Dr. Saraiya is a medical oncologist at Rutgers Cancer Institute and Associate Professor of Medicine in the Division of Medical Oncology, Solid Tumor Section at the Rutgers Robert Wood Johnson Medical School.

Both Dr. Sanft and Dr. Biren are members of the 2023 Cancer.Net Advisory Panel for Palliative and Supportive Care.

View disclosures for Dr. Lee, Dr. Sanft, and Dr. Saraiya at Cancer.Net.

Dr. Lee: Hi, my name is Richard Lee. I'm a clinical professor here at City of Hope and also the Cherng Family Director's Chair for the Center for Integrative Oncology. I'm really happy to be here today and talking about the topic of advanced care planning. And I'll have Dr. Tara Sanft and also Dr. Biren Saraiya introduce themselves as well.

Dr. Sanft: Thanks, Dr. Lee. I'm Tara Sanft. I'm a breast medical oncologist at Yale Cancer Center and Smilow Cancer Hospital in New Haven, Connecticut. I am board certified in medical oncology and hospice and palliative medicine. I do direct the survivorship clinic, which is an appropriate place for advanced care planning that we can touch on today. I'm really happy to be here.

Dr. Saraiya: Hi, my name is Biren Saraiya. I'm a medical oncologist focused on GU medical oncology and also a board-certified palliative care physician. I'm at Rutgers Cancer Institute of New Jersey. My focus is on decision-making. My research interest in decision-making and end-of-life planning for patients with serious medical illnesses. And I do a lot of teaching on this topic at our medical school. And I'm also glad to be here, and I do not have any relevant financial disclosures.

Dr. Lee: Thank you so much for both of you for being here. I should also add, I don't have any relevant financial or disclosures, conflicts of interest.

Dr. Sanft: Thank you. I'd like to add that I do not either. Thanks for the reminder.

Dr. Lee: Yes. Thank you both. And so this is a really important topic that we deal with when we see patients, especially those with more advanced cancer. Could you talk about when we say advanced cancer, what does that really mean?

Dr. Saraiya: When I think of advanced cancer, it is either cancer that has come back, recurred, or that is no longer curable, no longer something that we can't completely get rid of. So many times, it is what we call stage four cancer. Each cancer is a bit different. So it's a general rule of thumb, but not necessarily intelligible for every single cancer. But that's what I mean when I say advanced cancers to my patients.

Dr. Lee: How about yourself, Dr. Sanft? Do you use a similar concept, or is it a little bit different?

Dr. Sanft: I agree with all that's been said. Advanced cancer typically involves the spread of the cancer to other sites outside of the primary site. And the strategy tends to be a chronic long-term management strategy rather than curative treatment, although not always. And as our science becomes more advanced and sophisticated, these terms can apply to people with all different tumor types and locations of involvement, and that's really exciting. But in general, advanced cancer is very serious and can often be life-threatening and needs to be dealt with always.

Dr. Lee: And that leads into the next question, which is, if it's not possible to completely cure the cancer, does that mean there's no treatment available for these patients?

Dr. Sanft: Absolutely not. Does it mean that there is no treatment? Even when anti-cancer treatment may not help the situation, there is treatment. And I think as palliative care professionals, in addition to being medical oncologists, treating symptoms and treating suffering that comes with symptoms from cancer is always on the table from the time of diagnosis through the balance of life. And when a diagnosis comes through that is life-threatening or advanced or stage four, it is very common to pursue anti-cancer treatment, sometimes many different types of treatment. And it's very rare that someone with a new diagnosis of advanced cancer would not qualify for any anti-cancer treatment.

Dr. Lee: Thank you. And moving along with that same concept, Dr. Saraiya, could you talk about what are the kinds of treatment options available to patients with advanced cancer? And then could you comment a little bit what Dr. Sanft was talking about, which is also there's anti-cancer treatments, but then there's also these treatments that help with quality of life and symptoms. And can they be coordinated together? Are we choosing one or the other?

Dr. Saraiya: That's a great question. The way I think about this is I always want to focus on what's important for the person in front of me, what's important for the patient. And so even when there is no cure for the cancer, it is certainly treatable. And as Dr. Sanft pointed out, we have many treatments, many types of treatments. So they are delivered by someone like me or Dr. Sanft who are medical oncologists, but also by our colleagues in radiation and surgery and our colleagues in palliative medicine. So it depends on what the symptoms are; we can discuss how to best address it. And sometimes it requires radiation, short course of radiation. Sometimes that's the most effective thing. Sometimes it requires medicines that are by mouth or chemotherapy that are intravenous or by mouth or immunotherapy or different kinds of newer agents that we are using these days. So they can be delivered under the care of a medical oncologist. We can also have sometimes something that's very painful, and the surgeon can remove it. And that is also just as good of an option.

So what we choose to do depends on what the objective is, what we are trying to accomplish. And to me, at any point in time I see a patient, every single person I meet with, my goal is how do I help them live better? What's important for the quality of life? And many times is what I do as a medical oncologist, many times it's just listening to them and talking to them and providing support, either myself or my staff or social work. And many times, it's my colleagues in palliative medicine who are helping me care for their symptoms such as pain, other symptoms that I may have a hard time addressing by myself. And so we call on their help when we can't address it.

Dr. Lee: We've touched upon the topic of palliative care and supportive care, that terminology. And I'm wondering if you could expand on that so we have a common understanding. And how is that different than hospice care?

Dr. Saraiya: This is how I explain to my patients and my students, which is to say, when I went to medicine and I asked my students this question, how many times do we actually cure cancer or cure anything, forget cancer, just anything? And the fact is that most times we don't cure many diseases. So things like high blood pressure, diabetes, high cholesterol, heart disease, liver disease. We don't cure things outside cancer as well. But what we do is we help patients live long and well for long periods of time. We focus on quality of life. And in essence, we are providing palliative care. So I define palliative care anything that helps patients live better or live well. Sometimes we can cure things as well. So many cancers are curable. But let's say you have extensive surgery for a cure of the cancer, but you have pain from the surgery. We certainly help give you pain medicines. That's palliative care. And so for me, palliative care is anything that we do to help alleviate patient's symptoms. It can be delivered by the surgeon who prescribes pain medicine postop, by radiation doctor, who helps with palliative radiation, by medical oncologists like myself and Dr. Sanft, who give medicines for nausea, vomiting, or other symptoms that either the treatments or the cancer itself is causing.

When we need help of our colleagues who specialize in this is specialized palliative care. And some just call it supportive care. It's just a naming terminology. As long as we are helping patients live better, any intervention we make to me is palliative and supportive care. At a time when we agree, both patients and we agree that look, our focus is just on comfort. We are not going to focus on cancer anymore. And we're going to focus on just quality of life. That can be dealt with palliative care and hospice care. Hospice care is a very specific defined insurance benefit that requires certain certification. And that's the difference. So palliative is something required from day one, I meet a patient. It doesn't matter what they have until the end of their life. And sometimes even after that, caring for their loved ones after the patient has died is also palliation. Hospice care is a very small piece of that when we are just focused on end-of-life care.

Dr. Lee: I appreciate that understanding. And I think it's a great point that you make that anyone can be providing palliative and supportive care. It doesn't take necessarily specialists, but different types of oncologists and other clinicians can be providing in addition to specialists. And Dr. Sanft, could you talk a little bit about this concept about after kind of after a patient may pass through hospice? Dr. Saraiya was mentioning about emotional and spiritual support. How can we help patients find that kind of support from diagnosis through the whole journey?

Dr. Sanft: Yeah. I really think of palliative care as taking care of the whole patient. So not just treating the disease, but really addressing the emotional, spiritual, and other physical aspects that cancer and its treatment can impact on a human being that's undergoing this. And then, of course, the entire family unit. So the importance of addressing all of these aspects has been shown in so many different ways. And getting palliative care involved early can really impact how that individual does with their disease course. But it can also provide the structures around that spiritual and emotional health for the patient and their family from diagnosis throughout. And as Dr. Saraiya mentioned, when the time gets short and the end-of-life time is near, palliative care and hospice care in particular can really provide a lot of that bereavement support or that anticipation of loss. And then, of course, all the grief that comes after the loss.

Dr. Lee: And could you expand a little bit in terms of if patients are starting to feel some emotional spiritual needs, how do they find help? Or what should they be doing in terms of connecting with their clinical team to get that type of support?

Dr. Sanft: I would like to say first that I think part of it is on the medical team ourselves to ask patients. Our culture in general is not one that often openly discusses emotions. So what I teach the medical students is, for every visit, how are you doing with all of this emotionally? And that is a very open-ended question that patients can reflect on and share what they're comfortable sharing with their providers. Now, not all of us who are practicing learned these techniques when we were going through medical school. So your doctor and medical team might not automatically ask about your emotional health.

So it is within a patient's right to say, "I would like to discuss with you how this is impacting me emotionally. Could I share that with you?" And really, I think most healthcare professionals come into this profession to help. And this is a very rewarding conversation to understand how this is impacting you and your family emotionally and then trying to get the support that is needed. Most cancer teams have social workers that are highly trained in assessing and counseling and helping patients get triaged into the help that they need, whether it be a support group or a psychologist or a psychiatrist or all of the above. Usually, social workers are embedded in many cancer teams. And if it's not a social worker, it may be another trained professional who can deal with this. But certainly, the medical team is the place to start and to really raise emotional health and spiritual health issues, even though we might not routinely be asking at every visit.

Dr. Lee: Great points. And as we think about the journey and we talked a little bit about hospice care and kind of the end phases, sometimes patients fear losing their capacity or ability to really think clearly and maybe even make their own decisions. How can patients in these situations who are concerned about making their wishes known, how can they make sure that's communicated if there is a situation, maybe temporary, maybe longer lasting, which they have trouble with making medical decisions on their own? Dr. Saraiya?

Dr. Saraiya: So I think, hopefully, all adults, all of us, have sort of thought about what-if scenarios in our lives, right? I think the thing I tell my patients that maybe there are three or four people in the room, and it's entirely possible, I'm not the one here tomorrow morning because accidents happen. And we certainly have seen that in our daily lives that suddenly things happen. So hopefully, every adult has thought about it. I always prompt my patients to tell me what they have thoughts about, what thoughts they have had. And I ensure that they have some sort of documentation. This is what we call advanced care planning documentation. Sometimes it's a living will, healthcare proxy. Different states might have different documentation. And many of them may have had it as part of their normal will or their sort of lawyers have drawn it up. I always ask them to sort of just tell me or discuss with me what they have written down. If they have not, I encourage them to have that conversation with their loved one. And there are two points. One, at least have had that thought, and the second, have the conversation.

At no point in time do I want my patients' family, their loved ones, whether it's a spouse, whether it's a child, to have to answer the question, "What do you want for your loved one?" It's always about, "What will your loved one want for themselves?" And so that is my responsibility to facilitate the conversation to make sure that the patient and the family has had that discussion. Once they've had it, document it, whether it's an advanced care planning or many states like my state of New Jersey have specific forms for-- it's called Physician Orders For Life-Sustaining Therapies [POLST]. So especially in a setting with advanced care and we know we had the conversation. We can't cure this. It's about their quality of life, how they want to live. And patients have the absolute right to tell us and guide our decisions in what kind of treatments are acceptable and not acceptable. And that can only happen if you had the conversation. We have discussed things that are important for them. Are they okay being in a situation where they are not able to communicate? And whatever the what-if scenarios are for themselves, let's help figure those things out and make sure that we value their opinion, their autonomy at every single point by completing this advanced care planning documentation, and more importantly, having the conversation with loved ones so they can ask the question, what would your loved one want in the situation?

Dr. Lee: Those are really good points. And I imagine a lot of individuals, a lot of patients, may not have had that conversation. And so what suggestions do you have for patients who are maybe newly diagnosed? They're just totally surprised by the diagnosis. Unfortunately, it may be, in some cases, it's advanced. Dr. Sanft, how would you suggest patients discuss this topic with their family and friends? Are there certain types of questions to be thinking about or certain topics?

Dr. Sanft: Oftentimes, in the midst of a new diagnosis, the whirlwind of having that upside-down feeling is so strong that it's very difficult to then think out into the future. However, once the treatment plan is in place, that tends to be a time where things could sort of be evaluated and the horizon might seem a little bit more stable. And I think most patients are willing to admit that the gravity and the seriousness of the situation that's facing them, yet it's very difficult to really reflect on what might happen in the future or what you might want. I think it's really important from a patient perspective to think, "What are your most important priorities?" And that could be a good framework to start to think about if you aren't able to do these priorities, then what else would you want?

So if being able to walk around your yard and enjoy the garden is a very high priority, even identifying that and understanding that can give you some framework, or talking about that with your loved one can give you some framework down the line if that becomes an impossibility. If interacting and talking with your children or your grandchildren is one of the highest priorities, if that ever became impaired, then how would that influence what you would want? So again, it doesn't have to be yes/no questions that you're answering, but it can really be an understanding of what brings you joy, what are the most important parts of your life, and if those were threatened, then how would you reevaluate the quality of your life?

Dr. Lee: I think that's a good way of framing the priorities and thinking through that with your loved ones. And for Dr. Saraiya, next after they've had some of these discussions, what should they be asking you and Dr. Sanft as the healthcare providers and helping to guide along these important conversations around advanced care planning?

Dr. Saraiya: I will answer that question, but I just want to sort of highlight what Dr. Sanft said is so important, which is really prioritizing and framing. And I think framing is so important. And to sort of put some of the other things Dr. Sanft talked about, the emotional and spiritual support, when someone walks into our office, many times they're really scared. And I take this opportunity to really sort of ask them important questions like, "What are your worries?" Which allows for them to emote a bit about what their worries are. And sometimes it's uncomfortable, right, because they're crying. They're worried about death and dying and what it means for the family. It's hard for the family. It makes a lot of us uncomfortable. But I think it's also very important. So I do take the opportunity early in my interaction with patients just to allow them to emote and just to process their worries. And sometimes I'm acknowledging their worries. Sometimes I'm telling them that those worries are maybe not reasonable, right? Sometimes people say, "Well, I'm going to die next month." And they know that's not the expectation. So they have worries that may be unreasonable.

So I can help talk and address specific worries at that point in time. So we do have to-- and again, this is why we have a team. Many times, patients are not comfortable talking to me about some of their worries, but they are much more apt to talk to my social worker or my nurse or my infusion nurse where they spend hours at times. And they will tell them things that they may not tell me. They will talk about some of the side effects that they have that they won't tell me because they worry. This is my hypothesis and what the research shows. They worry that because I hold that key to that chemotherapy or that key to that treatment, that if this is something that I may not like, I might hold it. And so patients have this natural tendency to not tell me absolutely everything. That's why we have a team. We gather all the information to make sure that we sort of make the right decisions. Sometimes we do have to help patients and families facilitate their conversations to make sure that we address their worries, their fears, their emotions. And it can be done, as I said before, just by us as the primary oncology team or our palliative care team or our social workers or nurses. All of us provide a different role for each patient. And in some patient cases, it is me, and some patients sometimes it's my nurse or sometimes it's my infusion nurse, or sometimes my social worker. And sometimes I do need the help of my palliative care and hospice colleagues.

Dr. Lee: And, Dr. Saraiya, coming back in terms of just guiding patients, are there certain questions you wish your patients might ask you in terms of helping to kind of navigate these difficult conversations?

Dr. Saraiya: I think many patients have this one question, that they have a hard time asking, which is, what's the treatment goal? And many times, we talk about is this something that's treatable. And the answer is yes. That was one of the first questions we're asked. Is it treatable? But many times patients have a question is it curable? And if the answer is no, then what does that mean? Or even if the answer is yes. What does that mean? I think most of us in our lives think about what-if scenarios, but it's really hard to ask those questions. So what I advise and sometimes I facilitate this, but I encourage if you're listening to this, you're a patient, ask your oncologist, "Well, what does this actually mean for me?" And if you have those questions, ask them, "What if this happens? This is my worry. Can I just tell you what my worries are and address them?" And with the worries, also come my hopes. Here's what I'm hoping for. How can I get there? How can you help me get there? And as Dr. Sanft sort of talked about before, if I have a situation where someone tells me, "This is my hope”, but I can't do it, it's not likely, I will tell them. But I will also tell them what we can accomplish, what we can do. And so I think having that honest conversation and patients and families can talk amongst themselves, but also with us as clinical teams to just make sure that we, at all points in time, address and put them and their needs in the center of focus.

Dr. Lee: Great questions. And Dr. Sanft, do you have any other questions you wish your patients would ask you in terms of helping to guide these challenging conversations?

Dr. Sanft: It's helpful for patients to come at questions about what to expect directly with us. I think it's most helpful when patients say, "Here's the deal. I'm feeling fine right now, and I want to keep going as long as I feel fine. And I want you to offer me every line of treatment until I don't feel like it's going to be worth it anymore. And we can continue to talk about that. And we'll do this together. I will let you know when I'm ready." And that allows me to say, "Okay. I appreciate what you're saying, and I agree with this plan, and we're on the same page. And when I see signs that things aren't going well, I will tell you." And it sort of sets these expectations upfront that we are all on the same page. We all want the same things. And we commit to each other, "You're going to tell me when this gets too hard, and I'm going to tell you when I think that this isn't helping anymore." And so it allows for this open dialogue to continue throughout.

Dr. Lee: Well, this has been a great conversation, and learned a lot and think about priorities. And I think you make a very good point. This is an ongoing discussion. It's not a single discussion you have, and then it's done. It's really an ongoing process through the whole journey. Do either of you have anything else to add in terms of helping patients who are addressing advanced care planning?

Dr. Saraiya: My biggest ask or sort of consideration is all of us, as Dr. Sanft said in the beginning, all of us came into this to really sort of help. And that is still our primary goal. And good communication really facilitates that. And we have, as a medical team, have to sort of do, as Dr. Sanft pointed out, sort of explore a bit more and really address the concerns. At the same time, you also have to develop a language that we can all understand, both understand, patients and doctors. And I think that's the key work. And I think it's so important to have that partnership with our patients and our families to make sure that we are doing the attentive care that they deserve and they need. So I think having an honest conversation.

One thing I always reflect on is for my patients, they may start in the beginning saying what's most important for me is-- and we are in Jersey so going to the casino on the weekends in Atlantic City. And that's the most important thing for me. But there comes a time when they say, "No, I've changed my mind. Most important thing is having the Friday night dinner with my family." And a few months later, maybe, “I've changed my mind. You know what's really important? If I can just sit in the patio on my rocking chair and enjoy that. Can you help me make those things happen?” I think having those conversations, being aware that we can change our minds, I think is absolutely fine. It's encouraged. And I think that's what we expect.

Dr. Lee: Dr. Sanft?

Dr. Sanft: Oh, I love that. I think I love that. I'm so glad that you brought that up. And the only thing I would add to that is if there are things that you know in your heart you absolutely would not want, telling it to someone, your partner, your family, your decision-makers, and your medical team will really help make sure that that does not come to fruition. So it can be scary to voice those things, but most of us have an idea of what we would never want to have happen. And saying that out loud and making sure that someone close to you, ideally, also your medical team, but certainly someone who's close to you understands what that line is. That can help decisions that need to be made in difficult times make sure that they honor, that they know that that was not what you ever wanted to have, and we can help make sure that that doesn't happen.

Dr. Lee: Well, I want to thank both Dr. Saraiya and Dr. Sanft. This has been fantastic. I learned a lot myself in terms of communication and addressing advanced care planning. And I hope all of you listening also were able to learn some pearls of wisdom from both of them. I think your patients are very lucky to have both of you.

Feel free to look at Cancer.Net if there's more questions and a lot of information around advanced cancer and treatments and advanced care planning and having these discussions. So thank you both again. And stay tuned for more podcasts on these important topics.

ASCO: Thank you, Dr. Lee, Dr. Sanft, and Dr. Saraiya. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

ASCO’s first clinical trial is the Targeted Agent and Profiling Utilization Registry, or TAPUR Study. This clinical trial is intended for people with advanced cancer without other treatment options available, and whose cancer has at least one genomic variation that can be targeted with specific drugs.

In this podcast, Dr. Richard Schilsky discusses the TAPUR study and explains why it is significant. He also discusses what participants can expect. Dr. Schilsky is the Principal Investigator for the TAPUR study. He is also the former Chief Medical Officer for ASCO and Professor Emeritus at University of Chicago.

View Dr. Schilsky’s disclosures at Cancer.Net.

Dr. Schilsky: Hi, everyone. My name is Richard Schilsky and I'm the principal investigator of the ASCO TAPUR Study and the former Chief Medical Officer of ASCO. I'm happy to give you an overview and update about the study today. By the way, TAPUR is an acronym that stands for Targeted Agent and Profiling Utilization Registry. Hopefully, the reason for naming it that will become clear as you listen. The TAPUR study was conceived in 2013 and launched in 2016, and was based on the observation that there was a rapid increase in testing the tumors of patients with advanced cancer for gene mutations that might be contributing to the growth of the tumor, so-called genomic profiling, in the hope of finding a genomic alteration that could potentially be treated by a drug that was already FDA-approved for a different tumor type than what the patient had.

Meaning, in order for the patient to receive the drug, it would have to be prescribed off-label. The challenge with prescribing the off-label use of a drug is that most insurance plans don't cover the cost of treatment. Additionally, even if the patient were able to receive the drug, there was no mechanism for the oncology community to learn from the patient's treatment experience.

The TAPUR study has managed to address these challenges by providing access to FDA-approved drugs at no cost to the patient and providing treatment results to the oncology community regarding the effects of off-label use of the treatments being studied. Now, TAPUR is a clinical trial, and its primary objective is to describe the anti-tumor activity and toxicity of commercially available targeted anti-cancer drugs prescribed for treatment of patients whose tumors have a genomic alteration known to be a drug target or to predict sensitivity to a drug.

TAPUR was designed to be simple for providers and patients. It's a phase 2 study, meaning that we're aiming to learn about efficacy and safety. It’s prospective, that is, it enrolls patients going forward. It is not randomized. Everybody gets a treatment based on the genomic profile of their tumor and the available treatments in the study. It's a multi-basket study. That is to say, multiple therapies are available on the study that are targeting multiple genomic alterations. And it's a pragmatic study. TAPUR attempts to replicate routine clinical care. It's exempt from FDA oversight. It provides oral drugs that can be shipped directly to the patient's home after the first visit.

Now, as I said, the TAPUR study was launched in March of 2016. And as of this month, it's still going strong, with more than 2,700 patients having been enrolled at 267 locations in 28 states. So how does the study work? Well, a patient's physician has results of a genomic profile of the patient's tumor and determines that a study drug might benefit the patient. The patient then decides to participate in TAPUR and gives their informed consent. A molecular tumor board, which is a group of experts convened by ASCO, is available to consult regarding the proposed treatment or to provide alternative treatment options for the patient. A participating pharmaceutical company, and there are 10 right now, provides the study treatments at no cost to the patient.

The patient is cared for by their own oncologist, receives a standard dose of the drug, and is evaluated at standard intervals to see if the treatment is working and if they're having any side effects. ASCO has convened an independent data and safety monitoring board of cancer experts that periodically reviews results and determines whether treatment is promising for a particular cancer type and genomic alteration. That's what we call a cohort in the study. Once the data are finalized, ASCO publishes the study findings in peer-reviewed journals to inform clinical practice and future research.

So let me give you an example. There are specific molecular alterations that often appear in tumor cells that are important for driving the growth and progression of the cancer and can be targeted with specific drugs that interrupt those abnormal molecular pathways. Many of these alterations occur at low frequency, meaning in less than 5% of tumors of any given type. The benefit of the TAPUR trial having a basket design is our ability to evaluate multiple therapies simultaneously to target multiple low-frequency alterations, which ultimately offers more treatment options to patients who wish to participate in the study.

If the TAPUR study were set up looking to target only a single genomic alteration, we would potentially have to screen hundreds of patients in order to find one who is appropriate for the trial, which also means hundreds more would still be left without treatment options. But because TAPUR evaluates multiple treatments and multiple genomic alterations simultaneously, we found that about two-thirds of patients who were screened for the trial ultimately enroll.

A specific example of a drug and targeted gene alteration on TAPUR is the use of the treatment combination pertuzumab plus trastuzumab in tumors with ErbB2 amplification or mutation. Now, you may be aware that ErbB2 is a gene that is synonymous with the HER2 gene that is frequently amplified or overexpressed in patients with breast cancer. And this drug combination, pertuzumab and trastuzumab, is FDA-approved for treatment of patients with breast cancer. But in the TAPUR study, we found multiple tumor types outside the FDA-approved label that can benefit from this treatment if an ErbB2 alteration is detected, including patients with colorectal cancer, endometrial [uterine] cancer, biliary tract cancer, and lung cancer.

To learn more about TAPUR, please follow our progress at the ASCO website. In an effort to provide up-to-date information about cohorts that are available for enrollment on the TAPUR study, ASCO launched a public-facing status report in March of 2023. So first click on www.tapur.org. Click on the link to the ASCO website. From there, select study participation at the bottom of the page. Once at the study participation page, click on the link to see a list of study cohorts that are currently enrolling. The report updates daily, providing viewers with an up-to-date list of available study cohorts based on their genomic alterations. It's important to note that study cohorts are available on a first-to-enroll basis. You can also find information about current results from the TAPUR study on the study results page.

So what have we learned so far? Thus far, we've publicly reported results on 29 cohorts of patients. 17 gave a positive signal of treatment activity, 12 were negative. Now we feel it's just as important to report on the negative results as the positive results. If the treatment is unlikely to be effective for patients, it's important to inform the oncology community because all of the drugs in the study are commercially available and could be prescribed to a patient.

Enrollment to patients on TAPUR is very representative of the U.S. population. The study has broad eligibility criteria that allows more patients to enroll, including patients with an ECOG performance status of 0 to 2 and younger patients. Some treatments allow for adolescent patients as young as age 12 to be enrolled in the study.

We hope the oncology community finds value in the TAPUR study. Physicians have the opportunity to contribute to research and participate in publications and to contribute more knowledge in the field of oncology. TAPUR provides guidance on interpreting genomic reports via the molecular tumor board and provides additional treatment options for patients. Institutions obtain insights on potential new uses of existing drugs and their side effects, and TAPUR data can inform updates to clinical practice guidelines. And patients receive access to drugs not available as standard of care. Patients may be able to receive oral drugs at their home and limit their commute to clinic.

And of course, participation in the study provides an opportunity for patients themselves to contribute to knowledge about cancer treatments. To find a clinical site offering the TAPUR study, please visit the TAPUR website again, www.tapur.org and select “Participating Centers.” This will lead to a searchable map of participating sites and includes the site-specific contacts. Contact the primary contact listed for that site. Thank you for listening to this update on the ASCO TAPUR study and enjoy the rest of your day.

ASCO: Thank you, Dr. Schilsky. Learn more about clinical trials, including the TAPUR Study, at www.cancer.net/clinicaltrials.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this podcast, Cancer.Net Associate Editor for Lung Cancer, Dr. Charu Aggarwal, and Cancer.Net Specialty Editor for Thymoma, Dr. Ryan Gentzler, discuss what people with early-stage non-small cell lung cancer should know about their treatment options before and after surgery, called neoadjuvant therapy and adjuvant therapy, respectively.

Dr. Aggarwal is the Leslye Heisler Associate Professor of Medicine in the Hematology-Oncology Division at the University of Pennsylvania’s Perelman School of Medicine. Dr. Gentzler is a thoracic medical oncologist and Associate Professor of Medicine in the Division of Hematology/Oncology at the University of Virginia (UVA) Comprehensive Cancer Center.

View disclosures for Dr. Aggarwal and Dr. Gentzler at Cancer.Net. 

To begin, Dr. Gentzler will discuss what people with early-stage non-small cell lung cancer should know about neoadjuvant treatment options before lung surgery. Welcome, Dr. Gentzler.

Dr. Gentzler: Hi, this is Ryan Gentzler from the University of Virginia. We're here to discuss the role of neoadjuvant chemotherapy and immunotherapy for the treatment of locally advanced non-small cell lung cancer. So first, I thought I'd address some of the data and definition of what is neoadjuvant treatment. So when we think about treating lung cancer that is not metastatic, that is earlier stage disease, there typically involves multimodality treatment. Sometimes these lesions or tumors can be very small and can be stage I and treated with surgery alone or perhaps radiation alone and no further treatment is needed. But the vast majority of lung cancers that are considered early stage are in fact either larger tumors, involve lymph nodes, and typically fall into the category of stage II or III lung cancers. And these are cancers that often require multiple treatments beyond the local surgery approach alone.

When we think about how we deliver that treatment, it can either be given before surgery or after a surgery. If we give treatment before a surgery, we call that neoadjuvant. If it is given after the surgery, we call that adjuvant. And most of the data that we have today in lung cancer uses one or the other of these approaches, and we don't typically give treatments both before and after, at least in terms of the chemotherapy part of that treatment.

Historically, most of the data exists in the adjuvant treatment of lung cancer going back several decades that showed that the benefit of chemotherapy after a surgery, particularly for those with stage II and stage III lung cancer, derived a clear benefit of survival by giving chemotherapy after surgery. More recently, with the advent of immune therapy, which we have used in patients with stage IV lung cancer as well as those with stage III lung cancer who cannot undergo surgery, those immunotherapy drugs have been shown to improve overall survival and improve clinical outcomes for a wide range of patients with more advanced disease. And so in the last 4 or 5 years, we have really looked at new trials that have added immunotherapy in what we call perioperative space, either before surgery or after surgery for those that have surgically resectable disease.

I'm going to focus on the neoadjuvant approaches that we have seen today, and this largely all started with data from Patrick Forde out of Johns Hopkins and Jamie Chaft from Memorial Sloan Kettering looking at single agent treatment with nivolumab immunotherapy. This was no chemotherapy given for 3 treatments prior to or three cycles prior to surgery. And that trial demonstrated a high degree of patients with tumor reduction and more importantly, we saw that the pathologic response, meaning how much tumor was left under the microscope at the time of surgery, was higher than what anyone anticipated with just immunotherapy alone. That launched a whole series of larger randomized prospective trials evaluating largely the combination of chemotherapy and immune therapy prior to surgery.

Now, before we get into some of the results of these trials, I really wanted to emphasize some of the theoretical advantages to neoadjuvant approach. Now, the first potential advantage of giving neoadjuvant treatment is that we know when you start with immunotherapy and chemotherapy regimens and that's the first type of treatment, everyone is guaranteed to get that treatment. And we know that the completion rate prior to surgery is higher than it is after surgery. These patients can get all of the prescribed treatment and will be more likely to get it than if they get it after surgery. So this is one advantage. The other is potentially starting these medications which go throughout the body and treat the cancer, wherever it may be, earlier. We know that one of the risks of all cancers, but lung cancer in particular, is that even with good surgery and removing all of that cancer, there is a chance that there are cancer cells left behind, which leads to risk of recurrence in the years to come after surgery. Naturally, if we start the treatment that can eliminate those cancer cells, wherever they may be, and do that first, perhaps we catch this earlier with fewer cells that have escaped and have a more likely chance of success of eliminating the cancer and resulting in a cure.

The third, I think, is one that we still have yet to learn more about, but if we give immunotherapy in particular, these are medications that activate the immune system, particularly the type of immune system cell called a T cell. If that T cell is able to recognize tumor cells, it is more likely to be able to continue to attack those tumor cells. And if we give that treatment prior to removal of the tumor, perhaps that activates the immune system in a more robust way that it can go after these cancer cells and eliminate those that are left behind after the surgery. If you give the immunotherapy after a surgery and the bulk of the tumor, most of the cancer cells have been removed, it may be harder to find those antigens or foreign proteins that are expressed in cancer cells. So the immune system may not be as robustly able to go after cancer if you give it solely after a surgery.

Another potential advantage of neoadjuvant approaches is that it really helps us learn as oncologists how well a cancer is responding to a treatment. If we give these treatments for 4 cycles after a surgery, we don't know whether it's eliminating those residual cancer cells or whether it is totally ineffective. If we give it before a surgery and we see that there is tumor reduction or that there is a complete elimination of the cancer, we know that that treatment was an effective treatment at attacking the cancer cells and eliminating them. We know that the cancer was sensitive to that treatment. We can then better prognosticate how well the patients are going to do after surgery. We know based on the latest data that if you achieve what we call a pathologic complete response with chemotherapy and immunotherapy prior to surgery, meaning there are no cancer cells left when we look at that surgical specimen under the microscope, we know that those patients have a much better likelihood of surviving for longer periods of time than those who have active cancer at the time of surgery after prior treatment. And so neoadjuvant approaches allow us in a 2-month time frame to get a great sense of how well our treatments are working and able to prognosticate outcomes based on how well those cancer cells have been eliminated at the time of surgery.

One large phase 3 trial called the CheckMate 816 trial was a randomized phase 3 trial and that enrolled patients with stage IB through IIIA non-small cell lung cancer using the old staging system of the 7th edition. These would all now be categorized as stage II and stage III non-small cell lung cancer patients. And it randomized these patients to 3 cycles of chemotherapy plus nivolumab, which is an immunotherapy drug, and compared that to patients treated with chemotherapy alone for 3 cycles. After these 3 cycles of chemotherapy, which is about a 9-week time frame, patients had surgical resection of their tumors. And then after surgery, patients received no further treatment, although treating physicians were allowed to give additional treatments like chemotherapy or radiation if they thought it would be beneficial for these patients, although it was not mandated by the study. One of the first results we saw from this study was that there was a much higher rate of pathologic complete response of 24% of patients achieving a path CR [pathologic complete response] with the nivolumab plus chemotherapy combination compared to only 2.2% with chemotherapy alone. This was highly statistically significant and demonstrated a clear benefit for those receiving the immunotherapy. The other main endpoint of this study was event-free survival, meaning that the time that the patients were alive and without any significant event like cancer progression or death after the enrollment of the trial. And in this analysis, the median event-free survival was significantly longer in those who have received the immunotherapy plus chemotherapy combination prior to surgery.

One of the potential concerns about neoadjuvant treatment is that it may render patients unfit for surgery who otherwise could have had their cancer removed. When we look at the outcomes from this CheckMate 816 trial, it actually did not appear to be the case to a large degree. In fact, those that got the nivolumab plus chemotherapy combination were more likely to proceed on with surgery, and the majority did; 83% received the planned surgery. There were patients who were unable to receive surgery due to adverse events of their treatment, but that was only 1% of patients enrolled in the trial. Other reasons for canceling the surgery included disease progression, meaning the cancer got worse to the point where they could not undergo surgery, or other reasons, such as the patient declined surgery, or it was found to be unresectable at the time the surgeon wanted to remove the cancer, or poor lung function.

One of the insights we got from the surgical data from this trial were that those who received the combination of chemotherapy and immunotherapy had slightly higher rates of smaller surgeries like a lobectomy compared to a pneumonectomy for those who had received [chemotherapy alone.] There were also fewer numbers of patients who required a conversion from a minimally invasive surgical procedure to an open surgical procedure if they were getting the immunotherapy combination. A higher number of patients also were able to have complete resection of their tumor if they received the immunotherapy/chemotherapy combination. The length of hospitalization was slightly lower, and the rates of pain were slightly lower in those who received the combination as well. These comparisons were not statistically significantly different, but numerically, there seems to be at least a trend toward benefit in surgical outcomes in this neoadjuvant chemotherapy/immunotherapy approach. And I think this makes sense. We know that this combination is more able to eliminate a cancer and make it a pathologic complete response when we look at it under the microscope, and therefore, if there is shrinking the tumor to a higher degree, naturally, it seems there would be more likely of completely removing the tumor, using a smaller incision to remove that tumor, shortening the length of stay in the hospital and recovery time and pain control. All makes sense if we know that the treatment itself is able to reduce that size of the tumor.

There are many other phase 3 trials ongoing studying the impact of immunotherapy plus chemotherapy in the neoadjuvant setting. The AEGEAN trial has recently reported data at the AACR meeting this year in 2023 with similar results that we saw with the CheckMate 816 trial. There are 3 other phase 3 trials that are ongoing, one of which we will see later this summer called the KEYNOTE-671 trial evaluating pembrolizumab plus chemotherapy in the neoadjuvant setting and then 2 other trials evaluating nivolumab, the CheckMate 77T trial, or atezolizumab in the IMpower030 trial.

Each of these more recent trials typically have used 4 cycles of chemotherapy plus immunotherapy prior to surgery and also continued the immunotherapy after surgery for a period of time, most commonly approximately 1 year. From the data we have seen so far, it remains uncertain whether additional immunotherapy beyond the 3 or 4 cycles given in the neoadjuvant setting provides any additional benefit. We still do not understand what to do with patients who did not achieve a pathologic response whether further treatment would be of any additional benefit. We do not know if there will be further benefit even in those that achieved a pathologic complete response whether a slightly longer duration of immunotherapy would further improve outcomes in that group. We suspect with longer-term follow-up over the years of all of these phase 3 trials that some of these questions will be answered.

So what are some key questions that patients should ask when considering a neoadjuvant chemotherapy/immunotherapy approach? I think the first question that's key is what is my tumor stage? We know that the trials that enrolled patients with a neoadjuvant approach enrolled patients using our current staging system would be a stage II or stage III lung cancer. And this is where it gets really tricky is, what subdivision of stage III is it? We tend to think of stage IIIA's as being one that it would be surgically resectable, with a smaller number of stage IIIBs, and then stage IIIC, one that we would not typically recommend surgery for. I think the next question within the tumor stage is, is this based on imaging or based on the biopsies? And we know that biopsies are really the best way to stage locally advanced cancers, particularly getting samples of lymph nodes in the mediastinum. Sometimes what looks like a stage I or stage II on imaging is, in fact, a stage III based on biopsies that are done at the time of surgery. It's ideal to know that information prior to making the decision about surgery so that that surgery is not futile.

On the opposite side, sometimes there is imaging suggestive of lymph nodes that are enlarged in the mediastinum, and it's presumed that this is a more advanced stage III and is not surgically resectable. However, if you go and biopsy those lymph nodes, sometimes they are benign. Sometimes they are inflammation related to infection or cancer but do not actually contain cancer cells. And so we typically advise that getting biopsies of lymph nodes in the mediastinum, at least any that are particularly suspicious, is highly recommended for these locally advanced cancers.

I think the next question that's key to ask is, what are my tumor biomarkers? And there are multiple biomarkers that we look at in non-small cell lung cancer that help us decide what is the best treatment. What is the best approach? What is the best medicine to treat the cancer? We know that one of these biomarkers that is a key is a mutation. So multiple different mutations can occur in lung cancers, particularly those that are adenocarcinoma subtypes. And these mutations may be less likely to benefit from immunotherapy and we may want to take a different approach with surgery, chemotherapy, and potentially targeted therapies that specifically target that mutation that exists in the tumor.

The other key biomarker here is PD-L1. We know that tumors with a higher level of PD-L1 are more likely to respond and benefit from immunotherapy. As of right now, that PD-L1 status plays a more important role in the adjuvant setting. All of the chemotherapy plus immunotherapy combinations in the neoadjuvant setting seem to benefit the group as a whole regardless of that PD-L1 status. But still, an important biomarker that we should have prior to making all final decisions on treatment. I think another question that should be asked any time you have an earlier stage cancer is, is my tumor surgically resectable? And there can be many reasons why cancers are not resectable, perhaps due to the anatomy of where the tumor is located, if it invades into the mediastinum, for example, or is near large blood vessels, or perhaps because there are too many lymph nodes and this is a more advanced stage.

And so I think the main reasons for not being surgically resectable would be the tumor is too large, if the stage is too high, or is it more of a function of fitness for surgery and that can be because of other underlying lung disease. Perhaps removing part or all of a lung would not be safe due to impaired lung function to begin with. And I think it's important to understand that sometimes stage III lung cancers are resectable and sometimes they are not, and understanding the reason why they are not, I think, is important. And then I think lastly and ultimately when we're talking about a neoadjuvant approach, you want to ask your treating oncologist, "Would it be better to give my treatment before surgery or after surgery?" And really discuss the pros and cons with the physician and have them incorporate all of the factors that go into these treatment decisions. How well you'll tolerate chemotherapy, other medical conditions that may play a role in the likeliness of getting through those treatments safely, perhaps underlying diseases that may increase the risk of immune-related side effects with immunotherapy. You really want to factor in all of these things and discuss the pros and cons of a systemic treatment first versus surgery first before making final decisions on how to treat locally advanced lung cancer. All right. Thank you.

ASCO: Thank you, Dr. Gentzler. Next, Dr. Aggarwal will discuss what people with early-stage non-small cell lung cancer should know about their adjuvant treatment options for after lung surgery.

Dr. Aggarwal: This is Dr. Charu Aggarwal. I'm the Leslye Heisler Associate Professor for Lung Cancer Excellence at University of Pennsylvania's Abramson Cancer Center. And today I will talk to you about the use of adjuvant immunotherapy in the setting of early-stage non-small cell lung cancer. We'll start by discussing what adjuvant therapy is, what types of options we have for adjuvant therapy, what kind of testing is important, and what options there may be in terms of adjuvant immunotherapy. So let's get started. Early-stage lung cancer comprises of stages between stage I to stage III. These stages vary by the size of the tumor as well as the level of lymph node involvement.

In the setting of very early-stage lung cancer, such as stage I and stage II, as well as some select stage III lung cancers, we recommend surgical resection. And in these patients, the use of additional treatment is recommended based upon the pathological determination of the tumor size as well as the lymph node status. If usually lymph nodes are involved, we recommend adjuvant chemotherapy, and also, many experts will deliver adjuvant chemotherapy for tumors that may be larger than 4 centimeters even in the absence of lymph node involvement. The data for adjuvant chemotherapy comes from several large clinical trials that were conducted about a couple of decades ago now that demonstrated not only an improvement in preventing recurrence of the cancer but also a modest improvement in overall survival, really laying the ground for improvement and therefore becoming the gold standard. Four cycles of chemotherapy are usually administered about 6 to 12 weeks following surgical resection, and this is really the basis of our treatment in the early-stage setting.

In today's time and age, we now have several other options. We have treatment options that include molecular therapy, which is biomarker driven, as well as the use of immunotherapy. So it's actually very important for us in the adjuvant setting--or in the post-surgical setting--to test for mutations such as EGFR. It's also important for us to test PD-L1 status. So let's dive into why each of these may be important. Patients with EGFR mutations, especially those with sensitizing mutations in EGFR exon 19 or 21, now have the opportunity to receive a targeted therapy in the form of osimertinib, which is an oral drug, very targeted and specific for the EGFR mutation that has been studied in a clinical trial setting in patients with early-stage non-small cell lung cancer. In patients with stage IB to IIIA non-small cell lung cancer with EGFR mutation, use of osimertinib was associated with a significant improvement in our ability to delay the recurrence of cancer. Based on this significant improvement, FDA approved therapy with osimertinib, and it is currently available and ready to use. We usually recommend it for 3 years, so daily therapy for 3 years, and patients are monitored with routine CAT scans and lab work.

For patients who don't have an EGFR mutation, we do recommend broad panel testing. Of course, this is not the standard, but I think it's important for us to identify patients who may not benefit from immunotherapy. Patients that have an ALK mutation, for example, or ROS1 translocation, may not have the best chances of responding to adjuvant immunotherapy, and therefore, I think testing should be performed to make sure that we are having a shared decision-making conversation with our patients about the use of the correct adjuvant options.

In terms of adjuvant immunotherapy, we now have 2 approved agents. One of them is atezolizumab, and the other one that was just recently approved is pembrolizumab. Atezolizumab was approved on the basis of a large clinical trial called the IMpower010 study, which randomized 1,280 patients with stage IB to IIIA non-small cell lung cancer to either 1 year of atezolizumab or best supportive care. Of note, all of these patients had to have had adjuvant chemotherapy that included a cisplatin platinum chemotherapy. In the first analysis, we found that the disease-free survival or the probability of the patients remaining cancer-free was significantly improved in those patients that had a tumor expression of PD-L1 greater than or equal to 1% and received atezolizumab compared to patients who did not receive atezolizumab.

On the basis of this positive primary endpoint, the U.S. FDA approved the use of adjuvant atezolizumab for patients with stage II to IIIA resected non-small cell lung cancer after surgical resection and adjuvant chemotherapy. Recently, we heard that this does lead to small but significant improvement in overall survival. There is a trend towards improvement in overall survival. However, the data are quite immature at this point, and we do need longer follow-up to be able to follow this trend. The greatest magnitude of overall survival benefit was found in patients who had the PD-L1 greater than or equal to 50%. So it's important to know what the PD-L1 level of a patient may be when I'm thinking about adjuvant immunotherapy because adjuvant immunotherapy is most likely to benefit those that don't have an actionable mutation, such as EGFR, and those that have the highest PD-L1 staining, at least in the IMpower trial.

Secondly, the PEARLS clinical trial is a clinical trial that evaluated the use of pembrolizumab, which is another immunotherapy agent, again, in the adjuvant setting. For this clinical trial as well, there was a small but significant improvement in disease-free survival, again preventing the probability of recurrence in all patients that received pembrolizumab compared to the best supportive care. And basically, this led to also an approval by the FDA for the use of pembrolizumab. Again, now we have 2 options. Both of these are administered for 1 year.

What should patients know about therapy? These drugs are usually administered once every 3 weeks. They are given intravenously. Sometimes, we can change the treatment schedule to be either once every 4 weeks in the case of atezolizumab or every 6 weeks in the case of pembrolizumab. These may be associated with some side effects. Immunotherapy side effects that are most common are fatigue, chills, myalgias, or basically a feeling of pains in the body or joints.

But also, some serious life-threatening reactions can occur such as activation of the immune system to such an extent that the immune system may start to attack the body's organs. So this may lead to swelling or inflammation in the organs that may manifest itself as colitis if the gut gets inflamed, or pneumonitis if the lungs were to get inflamed, or pancreatitis if the pancreas were to get inflamed. Any organ in the body can really get inflamed. We've certainly seen cases of thyroiditis. We've seen cases of polyarthritis. We've seen cases where the brain may also get inflamed or the pituitary may get inflamed. So there are definitely some life-threatening reactions or side effects that can occur with the use of immunotherapy that should be closely monitored. The benefit of having used immunotherapy in the metastatic setting is that now we have a lot of experience managing these side effects. And if recognized early, these side effects can be managed appropriately with the use of steroids as well as holding therapy. Many of the times, we can even reinstitute immunotherapy without significant harm to the patients. However, I think immunotherapy benefits as well as side effects should be discussed in detail with the provider, especially in the adjuvant setting.

Patients may ask if neoadjuvant immunotherapy along with chemotherapy is a better approach compared to adjuvant immunotherapy. At this time, we don't have a clinical trial that is comparing neoadjuvant chemoimmunotherapy followed by surgery to an approach that is surgery followed by adjuvant immunotherapy. In general, I would say that if the decision by a multidisciplinary team has been made to proceed with surgery, careful discussion should be had about adjuvant chemotherapy as well as the use of adjuvant immunotherapy, and molecular testing should be performed. All patients with early-stage disease should have a multidisciplinary tumor board discussion, which includes engagement with surgeons, radiation oncologists, pulmonologists, pathologists, and medical oncologists so that they can ensure that many experts have had the chance to weigh into their case as well as come to the right conclusion on whether or not to use new adjuvant chemoimmunotherapy or just to proceed with surgical resection.

ASCO: Thank you, Dr. Aggarwal. You can learn more about neoadjuvant and adjuvant treatment options for early-stage non-small cell lung cancer at www.cancer.net/lung.

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In this podcast, Dr. Allison Kurian and genetic counselor Kristen Mahoney Shannon talk about what people should know about genetic testing and hereditary breast cancer, including what to expect when meeting with a genetic counselor, ways to reduce your risk of developing cancer, and talking about genetic test results with family.

 Dr. Kurian is a Professor of Medicine and of Epidemiology and Population Health at Stanford University School of Medicine, and Director of the Stanford Women’s Clinical Cancer Genetics Program. She is also the 2023 Cancer.Net Specialty Editor for Breast Cancer.

Ms. Shannon is a senior genetic counselor and Director of the Cancer Center Genetics Program and Director of Genetic Counseling for the Massachusetts General Hospital Department of Medicine. She is also a 2023 Cancer.Net Advisory Panelist.

View disclosures for Dr. Kurian and Ms. Shannon at Cancer.Net.

Dr. Allison Kurian: I'm Allison Kurian. I am a professor of medicine, oncology, and epidemiology and population health at Stanford University. And I am speaking today with my colleague, Kristen Shannon, who will introduce herself.

Kristen Shannon: Hi, it's great to be here. My name is Kristen Shannon. I am a genetic counselor and the director of cancer genetics at Massachusetts General Hospital in Boston. And I have no financial relevant disclosures to report.

Dr. Allison Kurian: Thank you, and I have no relevant financial disclosures either. Very good. So today we will be talking about breast cancer and inherited risk and genetic testing. And let me start by providing a definition of a genetic or hereditary condition. So the way we think about this is something that has a high risk for developing a disease, not a certainty, but a high risk, and runs in families, generally because of a genetic finding that we can identify. And that typically is identified through sequencing, testing of blood or saliva samples, and typically allows us to find a change that we know is clearly associated with disease. A good example for breast cancer are the genes BRCA1 and BRCA2, which some may have heard of, and we will talk about further. So that is just an example, and we will get into more of the details of this as we go on. But I think the point is something that runs in families often is seen with the trait, so for BRCA1 or BRCA2, that would be breast cancer or ovarian cancer, affecting people in every generation. And having what we call for these kinds of genes an autosomal dominant inheritance pattern, so inherited from either parent. And taking only 1 copy that is not functioning to give a person higher risk of the condition. So that's sort of a bit of the basics here on genetic or hereditary risk.

And just to give a sense of how common hereditary breast cancer is, we think that in general this may account for, I would say, somewhere between 5% to perhaps 10% of cases of breast cancer. And Kristen, please jump in and tell me if you think differently. But that would be my ballpark. And I think probably the majority of those are the BRCA1 and BRCA2 genes that I mentioned, although there are others that we are recognizing are playing more of a role than we thought, and we'll discuss those, too. So let me give you a chance to continue and respond, Kristen.

Kristen Shannon: Yeah, no, I totally agree. And I was thinking that maybe I could talk a little bit about some of the features that are suggestive that there could be one of these inherited breast cancers in the family, because recognizing these signs of hereditary breast cancer can be super important for early detection and prevention of breast cancer. So first, multiple cases of breast cancer within the family, especially among close relatives like parents, siblings, children, those can be a sign that the cancer is inherited. Another important sign is early age of onset of disease. So breast cancer diagnosed at a young age, typically before the age of 50, might point towards hereditary risk. And it's not always the case, but it's something to be aware of. Also, if there is a history of ovarian cancer in the family, especially if you see it in conjunction with breast cancer cases, that's a significant sign that there could be something inherited in the family. And while it's rarer, male breast cancer can also be associated with hereditary gene mutations. So if there's a history of male breast cancer in the family, it's definitely something to think about in terms of hereditary risk.

Multiple cancer types in the family can also be another clue. It's not always just breast and ovarian cancer. If you see a family history of both breast and ovarian cancer or pancreatic cancer or prostate cancer within the same family, that also might be a sign of an inherited cancer syndrome. For individuals of Ashkenazi Jewish descent, it's worth noting that they have a higher prevalence of certain gene mutations in specific genes, specifically BRCA1 and BRCA2, which Dr. Kurian has mentioned before. So a family of history of breast or ovarian cancer in an Ashkenazi Jewish individual should be noted as a higher sign that this cancer could be due to an inherited gene. And lastly, if someone has had breast cancer in both breasts, that's called bilateral breast cancer, and that might indicate hereditary risk.

It's important, though, to remember that it's not just about any single sign in isolation. You really need to take a look at the bigger picture and the bigger context of the family. So if you notice any of these signs in your family, it's a good idea to seek guidance from a health care professional, like a genetic counselor or a medical oncologist, and they can help assess the family's risk and recommend genetic testing if needed. Dr. Kurian, did I forget anything or leave anything off?

Dr. Allison Kurian: Perfect as always. I will just add a little bit here in terms of the specific gene names that we think about, because sometimes it helps people to have sort of a list in their minds, not that we expect you to remember the whole alphabet soup of these different genes. And let me just say that I think it's always a bit of a hodgepodge, some of these names. I used to wonder how people come up with these names, and often there's a bit of a history there. But I will just go through a few of them. We now have some practice guidelines, and they are basically put together by a group of experts who review all the evidence frequently and come up with recommendations. And so there is a list in these guidelines of basically which genes we think are appropriate to test for breast cancer in families, because there's enough evidence to suggest that.

And so in addition to BRCA1 and BRCA2, the ones that I think of as the most important, and I'll want to hear Kristen's thoughts about this, too, but the ones that we see most often are called ATM. Sounds like a cash machine, unfortunately not, but ATM. CHEK2, C-H-E-K-2, and then one called PALB2, which stands for Partner and Localizer of BRCA2, and is a lot like BRCA2 in its risks.

There are some other genes that give breast cancer risks that are less common. One of them, CDH1, is a gene that also causes an increased risk of stomach cancer. There are a few others that we always keep in mind. There's one called PTEN that's very rare that causes a syndrome called Cowden syndrome that I certainly haven't seen much of. Kristen may have seen more, but it's not something we see often and goes with a lot of other features in families. There are 2 genes that I think we recognize more in recent years and like to be sure we test, called RAD51C and RAD51D, and those both give increased risks. And then another one that I always think of as important here is TP53, and that is a gene that causes something called Li-Fraumeni syndrome, which has probably the highest cancer risks of which we know. There's another one, STK11, that gives some risk, NF1. We see these as being less frequent contributors. Those are the ones that I kind of keep in mind. And again, there will not be a quiz on the alphabet soup, but just so you're aware of what kinds of names you might hear. Kristen, please jump in if I've forgotten any or anything else you want to say.

Kristen Shannon: No, I think that that's important. I think the only thing that I would add is that some people think when they go in for breast cancer genetic testing, they only are getting the BRCA1 and BRCA2 gene. And it's just important for people to realize that that's not really a complete test at this point, as you mentioned, Dr. Kurian.

Dr. Allison Kurian: Totally agree, and thank you.

Kristen Shannon: Should we move into how to prepare for a genetic counseling appointment?

Dr. Allison Kurian: Please, yes.

Kristen Shannon: Sure, okay. So preparing for a genetic counseling appointment for breast cancer risk can be helpful. First and foremost, we suggest that you gather your family health history. So reach out to your relatives and compile as much information as possible about your family's health background. Pay special attention to any instances of breast cancer and ovarian cancer, prostate cancer, pancreatic cancer in the family. And if any family members have had genetic testing, it's really helpful to jot down those test results as well and bring them with you to the appointment. The other thing is to think about your own personal medical history. You know, think about if you've had any past diagnosis, any treatments, surgeries, or medical conditions, especially those related to breast cancer, your genetic counseling appointment will include a discussion of those. The other thing is, you know, if you've had any medical tests related to cancer, it's important to gather those records if they're not already in your hospital's medical record system that you are going to.

Another good idea is to just prepare a list of questions that you might want to have answered. So what do you want to know? Are there specific concerns or specific things you're curious about? It's also important to understand what you want to get out of this genetic counseling encounter. Do you want to just clarify your risk of having a gene? Do you want to consider genetic testing? Or do you want to talk about just managing your risk for breast cancer? That's super important to have that in mind before you actually go into your appointment. Lastly, I would consider bringing along a person, a supportive person with you to the appointment. Having someone with you can help provide emotional support because sometimes these visits can get emotionally charged, but it also can help to have someone remember important details that you will discuss with your health care provider. So it's really important to just arm yourself with information, questions, and support so that the appointment is as productive and informative as it can be. Do you have anything else you'd like to add, Dr. Kurian?

Dr. Allison Kurian: It's wonderful to have your expert perspective on this. And I guess any thoughts about really what's inside the box? I think sometimes people just sort of wonder what's going to happen when I go in that room. Sometimes we have patients come in and say, “What are you guys going to do to me? Will there be surgery done?” And we reassure them that we are not doing anything that wild. And so maybe just a sense of kind of walking people through what will happen when they go to meet with genetic counselors.

Kristen Shannon: Absolutely, thanks for bringing that up. So during the initial meeting, first you'll probably discuss your personal health history, again, any past diagnoses, surgeries, medical conditions. And then typically a genetic counselor or a medical professional will dive right into your family health history. So they'll ask a whole bunch of questions about your close and extended family members to build a really comprehensive picture of your family and the cancer diagnosis in it. They'll want to know if anyone in your family has had cancer, and they'll also want to know what type of cancer that person has had and also the age at which that person was diagnosed. So those are the 3 pieces of information that your health care provider will want to get from you.

The genetic counselor will also probably ask you about what you want to get out of this encounter to make sure that you're both on the same page. Again, do you want genetic testing? You know that already. Or do you want to just talk through the process?

So the big part of the initial meeting is really education. The genetic counselor will explain what Dr. Kurian described at the very outset of this discussion, what's the genetic basis of hereditary breast cancer, including all the specific genes that Dr. Kurian—the alphabet soup that we talked about. Talk about inheritance patterns and the implications of having a genetic mutation. The genetic counselor will probably also first assess your risk of having a mutation in one of the genes, and then they'll also talk to you often about genetic testing. So if genetic testing is on the table and you and the genetic counselor both agree that it's a good step, they'll walk you through the process of informed consent. And so this ensures that you understand what the testing entails, the potential outcomes, the implications of the test results.

And then if you decide to go through with genetic testing, you will provide a blood or a saliva sample. And then it's a waiting game because these test results can take several weeks, usually about 3 to 4 weeks to get the test results back. When the test results come back, you'll typically have a follow-up appointment, either in-person or on the phone with your genetic counselor. And that's when they spend a lot of time interpreting the test results, explain what they mean for you and your health, as well as discussing the appropriate risk management strategies, if necessary. And if a gene mutation is identified, a genetic counselor will guide you on how to manage these risks. But it will depend on the specific mutation that is identified. And then the other thing that the genetic counselor can help with is just the emotional support. Some people have a harder time than others hearing this information. And also to talk about how to tell your family members about this. So in a nutshell, the initial meeting with the genetic counselor is about gathering information, assessing risk, and potentially deciding on whether or not you're going to have genetic testing. And then after that step, it's about interpreting the test results, talking about next steps, and providing emotional support.

Dr. Allison Kurian: Thank you, Kristen. That was wonderful and very complete. And as I was listening to you, first of all, I was thinking about my general admiration for genetic counselors, which is huge. They taught me everything I know about this field. But so also kind of highlighting the key things that a meeting with a genetic counselor will do for you, as you so nicely did. And I think it's getting the right test ordered, making sure that the results make sense to you, and going beyond the patient. But I think those are sort of the key aspects that you communicated really well of the things that we want to get done there.

Kristen Shannon: Well said, well said. And I couldn't agree more.

Dr. Allison Kurian: And what do you think about the family part in terms of how that gets done?

Kristen Shannon: Right, so discussing your genetic test results with family members can be hard and challenging, but it's really, really important. In terms of talking to your family members, I think first, determine the way you're going to notify your family members. So are you going to talk to them? Are you going to send them a letter or an email? And how you share the information may be different based on your relationship with that person. So for example, you may sit down over coffee with a close family member to talk about your test results, but you may choose to write a letter to someone that you don't have that much contact with.

The next thing that I think is really important is to be prepared. So before you even start to have this conversation, make sure that you have a clear understanding of your genetic test results, the implications to you and to the family member. That's super important before you even start to have the conversation so that you can explain things to people in simple terms without too much medical jargon and make sure you keep it straightforward. It's really helpful to have a copy of your genetic test results and to provide that to your relatives if you're comfortable doing so, because then they can take that information with them to their genetic counseling or genetic testing appointment, which can be incredibly essential in terms of making sure that they get the correct test at the right time and the test results are interpreted correctly.

The only other suggestion I have is just to keep in mind that family members are going to react very differently to this information. And some people will be very matter of fact about it. Some people might get a little distracted by this whole thing. So just to be patient with people and keep the conversation open. Allow them to call you if you're willing to do that so that the conversation can develop over time because, you know, really, in the end, the goal is to make sure that everyone in the family is well informed and makes decisions based on their own health and their well-being.

Dr. Allison Kurian: Thank you. I couldn't agree more. And we sometimes, as people may have heard, call this “cascade genetic testing.” So a patient is tested. Somebody who's already had cancer maybe is tested. But then we have the opportunity to have this cascade of beneficial genetic testing, where we can get to people before they have cancer and work on prevention and screening, which I'll talk about in a minute. And I will say that, in general, we here in the United States, and certainly other places as well, don't do as well as we would like with cascade testing despite all best efforts of everyone. And so just to emphasize that family notification is super important, genetic counselors are wonderful at helping people to do that. And I think also additional strategies and interventions are underway to try to help make that easier.

So if I may, I'll talk just a little bit about kind of what we do when we find something. Is that okay to do?

Kristen Shannon: That sounds great. Talk about people, you know, what they can do about their test results.

Dr. Allison Kurian: Good. Yeah, so I always think that's important. I'm an oncologist by training. I'm not a geneticist. And again, it's only thanks to the brilliance of genetic counselors like Kristen that I have learned what I have for the last 2 decades working in the field. But so I tend to think in terms of what can we do to treat this person differently if they have cancer to prevent or reduce the risk of a future cancer. And so what I would say is increasingly over the last few years for a person with breast cancer, as well as some additional cancers, it started to matter what these results are in terms of how we treat the person, whether we might give different medications. And that's really exciting because for years in this field, we didn't have that, and now we do.

And so the drugs that are increasingly important are called PARP, P-A-R-P, inhibitors. And sometimes, if a person has a BRCA1 or BRCA2 gene mutation, we might even offer those drugs to treat a breast cancer or, in other cases, ovarian, prostate, or pancreatic cancer. So I think the testing can matter like never before in terms of what we might do to take care of people's cancer. Sometimes we might also choose a different surgery. So sometimes a woman who has a diagnosis of breast cancer might choose to do a more extensive breast surgery, she might choose a double mastectomy to reduce her risk of getting a second breast cancer. That's never required. She certainly doesn't have to do so extensive a surgery if she doesn't choose, but it is an option that some people might choose. And there might also be other cancer risks to manage in somebody who had breast cancer. BRCA1 and BRCA2, for example, give a high risk of ovarian cancer. And so we might talk with someone about the possibility of removing ovaries to prevent an ovarian cancer, which often is recommended with BRCA1, BRCA2, and other such gene mutations.

I will say that I think for somebody who hasn't had cancer yet, or hopefully ever, particularly as we think about breast cancer, we're often thinking about intensive screening. So starting often earlier than a person would if she didn't have high risk and generally adding magnetic resonance imaging, MRI, to screening with mammogram alone. And that really is, I think, the cornerstone for women at high risk is adding that breast MRI screening. For pretty much all of the genes I mentioned, that would be clinically indicated and covered by insurance and important to do. MRI has no radiation, very effective at finding breast cancer early.

So I think to summarize, it's really all about understanding risk based on a particular gene mutation, understanding if a different kind of treatment is needed for the cancer that a person has, understanding if any sort of preventive measure is needed for future cancer risk, and making sure that the screening we have for breast and for other cancers is appropriate to the level of risk. Anything to add there, Kristen?

Kristen Shannon: No. No, I think that that's great.

Dr. Allison Kurian: Absolutely. Yeah, so I think it's wonderful to have this opportunity to speak about the importance of genetic testing, which is I think more important than it ever has been at this time for the care of patients with breast cancer and their families. And so as we move into breast cancer awareness month, it's great to be able to talk about this. Thanks so much.

Kristen Shannon: Thank you so much. I agree. And if you have any questions, I would suggest you reach out to your doctor or look up on the ASCO website for a referral to a genetic counselor.

ASCO: Thank you, Dr. Kurian and Ms. Shannon. Learn more about hereditary breast cancer and genetic testing at www.cancer.net/hboc.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this Meaningful Conversations podcast, Dr. Lalan Wilfong talks with social worker Lydia Mills about what people with cancer should know when discussing their goals of care with their health care team, including the ways it can help inform their treatment plan and tips for navigating the conversation.

Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations.

Dr. Wilfong is a medical oncologist and the senior vice president of payer and care transformation at the U.S. Oncology Network. He is also a member of the 2023 Cancer.Net Editorial Board. Ms. Mills is a licensed clinical social worker and the senior manager of supportive care services at the U.S. Oncology Network. 

View disclosures for Dr. Wilfong and Ms. Mills at Cancer.Net.

Dr. Wilfong: Hi, I'm Dr. Lalan Wilfong, Senior Vice President of Payer and Care Transformation for the U.S. Oncology Network. And today we're going to be talking about goals of care. Lydia, can you introduce yourself?

Lydia Mills: Yeah, sure. I'm Lydia Mills, Senior Manager, Supportive Care Services. I work with practices across the U.S. Oncology Network, and I am a licensed clinical social worker.

Dr. Wilfong: So Lydia, what does it mean when we talk about goals of care during cancer?

Lydia Mills: Well, I think a lot of people think about what treatment is going to look like, what that prognosis is going to look like, what that end goal is going to be when they're having their treatment. I think it can be a lot broader than that. In fact, I've had some people say, “What do you mean by goals of care?” So I think it's really important to bring in, I think, the patient perspective when we're talking about this and what's important for them in addition to maybe what that cancer treatment is going to do for them physically, but also what is important to them as far as what do they want to work, are there things they want to accomplish, are there things they want to get done, are there things they want to do or see? As well as, you know, often the goal quote is to be cured, and we know that's not always the case. So what are some other things that they might want to accomplish? And, you know, I don't know from your perspective from a physician, but that's kind of what I saw with social work is kind of more what's really important to them.

Dr. Wilfong: Yeah, it's so important for people undergoing treatment for cancer to have an understanding of what they're going through. I've seen patients all the time, you know, at the end of life, look at me and go, “I wish I would have made a different decision.” And that's always super hard as a physician to realize that you didn't take the time to fully understand what a patient wanted. And they went through something that they made a different decision about if they had known better. And so I think it's so important to talk about that with patients so they truly understand what treatment they're getting, what the impact of that is on their quality of life, what the duration of improvement and survival and things is. Because like you mentioned, a lot of people take therapy thinking that they're going to be cured, and we know that's not going to be the case many times. So they can really understand and make sure that they're doing things that are appropriate for them, and that are aligned with what they really want to accomplish for the time of life that they have. So it is super important about that. Any other things that you think of that are important around the goals of care for people with cancer?

Lydia Mills: Well, you know, I think a lot of times when people start thinking about, well, I need to really think about getting quote things in order, right? They often think more of the financial piece. What am I going to do with my assets? They don't always stop to think about family members, relationships. Even, gosh, it's really important that we take that family trip in 6 months. You know, sometimes they just don't even always think about all those things. So I know I would always try to bring that into perspective as well, that it's not always just about, you know, the treatment and what that's going to look like and your financial aspect. But what are a lot of these other things that are important to you, your family, and your loved ones?

Dr. Wilfong: I know so many times people have these life events that they want to make sure that they are at, whether that's a wedding or a birth of a child or things. And being able to plan appropriately for that is so important. I just remember a story I heard from one of my physician colleagues recently where a patient who had a terminal illness was going to get married, and they really wanted to get married is a big thing, and they kept putting it off and putting it off. And finally, she convinced them to actually get married. And the spouse, after the patient had died, was so appreciative of the physician pushing them to get that done because it meant the world to him and to her to have that actual wedding event. And so just things like that are so important for patients to understand and so they can plan for their lives. So Lydia, when do you think these conversations should take place?

Lydia Mills: I honestly think the earlier the better. I mean, I think sometimes people want to wait and kind of see how things are going. And there might be an initial discussion when they're first diagnosed and treatment first starts. But I really think the earlier you can start talking about this and then keep checking in with the patient. And I would encourage patients to let those physicians know, like, hey, I really want to do this trip, or I really need to make it to graduation, whatever that might be, because depending on what that trajectory looks like, things change so frequently, or they can. And so, if you have kind of set milestones in your head of when to have the conversation, that may not always work for the planning for the patient and their family.

Dr. Wilfong: I completely agree. I think early and often is a phrase I like to use. And it changes, like you mentioned. I mean, people with cancer undergoing therapy, things change, their life changes. And so making sure that you're always going back to my aligning the treatment that we're giving to their goals of care is so important because it changes all the time. And I think that's one thing that we get hung up on, especially as physicians. We think these conversations have to be this long, drawn out, hour to hour long discussion with patients, which there's a role and a time for that. But many times, it's just that simple check-in of, are we still on the right track? Has anything changed with you that we need to address and make sure that we stay on top of that?

When we're having these conversations with patients, what typically is discussed? I mean, what do you think the main topics that a patient should expect to discuss during one of these?

Lydia Mills: Yeah, well, I mean, I think, and you can chime in from a physician perspective, but I think a lot of times it is, you know, what is this treatment going to look like? How is it going to affect you? Of course people often want to know about prognosis. Again, I think it's important to expand on that and find out, you know, what is important to the patient. If you're going to be on treatment for, you know, 6-plus months or longer, tell me what do you have going on? Do you have things scheduled? I think people are afraid often to interrupt their treatment so they don't want to talk about what's important to them. They want to make sure they're there every single treatment visit versus, you know, I really did have this trip planned or there's a life event occurring. They can usually take a break if the physician knows, right? So I think it can be a variety of things, but you know, definitely what it might look like in the next few months and sometimes it's hard to go beyond that, which I think brings in the why it's important to have these conversations frequently.

Dr. Wilfong: I agree. And I see so many times people don't want to talk about this stuff for themselves. It is so important for us to understand really what is important to them so we can give them the right therapy. And I would say I think people need to bring their open and honest self to these conversations so that the things that may be bugging you in the back of your mind, we want to make sure we get those out there and talk about them because I can't help you unless I know what's going on with you. So I think that's really important as well. These are hard discussions. I mean people are having to open themselves up, which is hard for a lot of people to do, to really talk about your goals, your fears. Lydia, how do patients come and bring themselves to these conversations? What can they do to prepare so that they're ready to have these?

Lydia Mills: Yeah, you know, I think it's really important. You know, a lot of times patients, like I mentioned, they're used to talking about how they're doing physically, their pain, their nausea. They're not always used to bringing up, oh, and by the way, this is what's important to me. So I think even just writing a list. I encourage people to keep it brief and concise, but have some bullet points to help you remember, and saying, gosh, thank you so much for telling me what this is going to impact. I want you to know that, you know, whatever it might be, I have this event coming up, or I would really like to take a break so I could spend a week at the beach with my family, or whatever that might be. Making those bullet points if you have questions, concerns, anything that you want to know, but make it brief, concise, and to the point. You may not get through everything that visit, but you know, at least the provider knows, and you can kind of preface it with saying, hey, I have a couple things I'd like to talk about today. It's always okay to say that. I just think sometimes patients are, like you said, they're a little hesitant to do that.

Dr. Wilfong: Yeah, no, I know it's—you go into the doctor's office, your mind goes blank. And so definitely having a list, writing things down, thinking through that ahead of time is important. And I know as a physician, many times, I'll broach a topic with a patient, they may not be ready that day. And I think it's important for us to, as the health care team, to make sure that we know the next time you come in, I really want to talk about these things so that they can have some time to prepare. Which brings me to, you know, what is the role of caregivers and loved ones in these conversations? Should they come, should they not come? Should you talk to your family? What do you think?

Lydia Mills: Ideally, if you're able to bring someone with you, now I know with the pandemic, some of that's changed a little bit, but it's great if you can bring at least somebody with you so that you can have other eyes and ears. And honestly, I think for that loved one, the family, the caregiver, at that point, maybe to ask some clarifying questions, but really to sit back and listen, hear what that patient has to say. It's not really a time to interject what you think and what your hopes are, it's really a time for the patient to be able to share with their loved one and the physician, like this is what is important to me. And so I always encourage the loved ones to be there, but so that they can hear and, you know, be able to better understand.

Dr. Wilfong: And I can't tell you how many times patients have told me they're doing something because of their loved one. When you actually talk about it with the loved one, there's a disconnect there because they're not talking about the stuff at home. And just having those conversations and having the team help facilitate some of those conversations sometimes helps the loved ones be able to come together better because, you know, I don't know about y'all, but my wife and I, very commonly we have different thoughts about things, but we never actually say we have different thoughts until it leads to some sort of conflict. I don't know what that says about me and my marriage, but hopefully I'm not the only one that does that. But it's very similar, and especially in a time like this, which is so stressful to get that alignment together. Because people tend to be more aligned than they think, and they make assumptions about the other person that until you have those conversations will remain assumptions. You may not be on the same page. Speaking of that, who in the health care team typically is involved in these conversations, Lydia?

Lydia Mills: The first thought people often think, you know, the physicians, maybe that advanced practice provider, if it's a nurse practitioner, physician assistant. But as a social worker, clinical social worker, I was involved in these conversations a lot and helping to facilitate not only between the patient and their loved ones, but with the providers as well. But, you know, I think sometimes people aren't necessarily, they don't really think that they're involved in these conversations, but I always encourage the whole health care team to be aware and to listen, because nurses, the infusion room, on triage, medical assistants, even the lab, patients share a lot of things. They get to know these people well, and they'll share a lot, and that's a good time to say, gosh, have you mentioned this or talked about this with your provider? Encourage that conversation. So I think in some ways, the whole health care team can be involved in these conversations.

Dr. Wilfong: You're right. When I started down on oncology many years ago, I always felt like I had to do everything myself, that I was the physician, it was my responsibility to manage all this myself. But I learned very quickly, thankfully had a very good care team that surrounded me and the patients, realizing that everybody had different skillsets. My skillset as a physician was managing the cancer, managing symptoms, you know, really understanding prognosis and things like that, whereas the care team was so much more skilled at helping with some of the other things that I'm not skilled about. Like social workers is a great example, Lydia. Can you talk a little bit about what social workers actually bring to this conversation?

Lydia Mills: People are often, when they come to the office, they're used to talking about their physical side effects and symptoms. And it's a great opportunity to say, but how are you feeling about this? You know, emotionally, tell me what is going on with your thought process here. And that's often where you start hearing about, you know, I'm afraid to leave my loved ones, I worry, I don't want to be a burden. You know, I have this important life event happening. That’s often where those conversations would happen because I would allow that space. But like you said, my skillset is different, and that's where my focus is, is more how are you feeling, where are you mentally and emotionally with this process.

Dr. Wilfong: And many times I've found that we start involving people even outside of what we think of the traditional health care team. A lot of patients have religious issues when they're dealing with a serious illness like cancer. And I can't tell you many times I've referred someone back to their local priest or chaplain or pastor to have some of those conversations that I'm not trained to do, but they are, and help them through some of that part as well. So, and even like lawyers and figuring out forms and documents to make sure that your assets and your wishes are done. It involves much more than just the health care team to do that. So Lydia, if a physician in a health care team is not really talking about this to a patient, they really want to talk about it, how do they approach us and get these conversations started? Any hints or tips?

Lydia Mills: Yeah, like I said earlier, I think jotting your thoughts down so that it's clear when you, you know, you can remember when you get into the office and just saying, you know, hey, I have some questions for you or some things that have been on my mind that I would like to discuss. If there's someone from the health care team that can be invited in to help facilitate, sometimes that is helpful. I know as a social worker, I used to do that quite often, but patients and their families can absolutely do it themselves, and it's okay. Again, sometimes the provider is so focused on these are the next steps, but it's not that they don't want to hear this information. It just doesn't always come naturally to think, to say, oh, and what else might you have that's not related to your side effects that you want to share with me? So I encourage people just to make sure they have kind of clear in their mind what they want to talk about because physicians' time is limited. And then just say, hey, I have a few things I'd like to talk about with you as well.

Dr. Wilfong: I agree, and great call out on how do you ask the other care team members. I mean, if you're sitting in an infusion room for a few hours, your infusion room nurse has a wealth of knowledge and support and potentially can raise things to the physician that you may not feel comfortable raising to them. I've had that happen many times as well where my nurse will come up to me and go, “Did you know Ms. So-and-so needs to talk about blah, blah, blah?” I'm like, “Oh no, but we will.” And so that care team approach can be really valuable. I think coming prepared with questions and comments as well, I mean, feel free to ask, what is this chemotherapy going to do to me? What are the side effects? What can I expect? Is there anything long term that's going to be a problem for me? Can I go back to work? Things like that. Any other thoughts about questions that people could potentially bring, Lydia?

Lydia Mills: Yeah, and you know, I think it's a great opportunity, because I would have some patients who were afraid to bring up to their physician that, you know, maybe they don't know if they want to continue treatment, or even pursue that, you know, next idea of treatment. So asking questions, pointed questions such as, well, you've told me what it's like if I'm going to have treatment and what to expect. What if I were to not have treatment? What might that look like? Or what if I only do it for a short amount of time? And you know, physically, what might that look like for me? Or if I don't pursue treatment at all, what might that look like for me? And I think sometimes, again, people are afraid to raise those questions, but they're very valid questions because sometimes the focus is on treatment, and maybe that's not what that patient wants to do.

Dr. Wilfong: I think you said it really well earlier when you talked about providing space. I think it's important for us as health care providers to provide the space for people to have these conversations, to initiate these conversations. But then I think it's also important for patients to feel comfortable having space with their caregivers, their loved ones, to have these conversations as well. So Lydia, any final thoughts or takeaways that we should leave folks with?

Lydia Mills: No, I just think from a patient perspective, don't be afraid to bring up the topic. And from a provider perspective, I don't know how you feel about this, but I think even those patients that have maybe curative intent, it's still important, I think, to have a conversation about what they're hoping to get from this treatment and what they might have planned, depending how long that treatment may last. Because I will tell you, it's mortality that comes to everybody's mind after diagnosis, you know, even with a curative intent. And so I just think it's really important, again, to bring this up with all patients. What is important to them? What are their hopes to get from this or not get from this?

Dr. Wilfong: Well, thanks, Lydia. I learned something from you every time we talk about this topic. So I appreciate the time. And definitely encourage everyone to have goals of care discussions with your physicians and health care teams. It's important.

Lydia Mills: Absolutely. Thank you.

ASCO: Thank you, Dr. Wilfong and Ms. Mills. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this podcast, Dr. Abby Rosenberg discusses what parents and family members of children with cancer should know about palliative and supportive care. She addresses the way palliative and supportive care is different from hospice or end-of-life care, what to expect when meeting with the palliative and supportive care team, and the ways this type of care can support children with cancer and their families.

Dr. Rosenberg is the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital in Boston, Massachusetts.

View Dr. Rosenberg’s disclosures at Cancer.Net.

Dr. Rosenberg: Hi, my name is Abby Rosenberg. I am the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital. And today we're going to be talking about what pediatric palliative care is, maybe demystifying it a little bit, and more importantly, talking about how it can help kids with cancer and their families.

I think one of the most important things to know about palliative care is that it is a specialized kind of medical care for people who live with serious illnesses like cancer. And folks who are receiving palliative care are receiving extra support to help them with complicated symptoms, pain, distress, as well as complicated decisions that they might need to make in the process of their illness.

Palliative care is really intended to help enhance a person's current care by focusing on their quality of life, and not only the patient's quality of life but also the quality of life for the whole family. In pediatrics, that includes parents, siblings, and other kids who might be members of the community. The way I think about palliative care is that it is really intended to help people live their best lives for as long as possible. And so with that in mind, it can really help a whole bunch of people who are affected by pediatric cancer.

And the way we do that is by delivering help through what we call an “interprofessional team.” And so a palliative care team in pediatrics includes physicians, it includes nurses, includes advanced practice providers like nurse practitioners, it includes social workers. It may also include child life specialists, psychologists, chaplains, other folks who are involved in the child's overall well-being.

Palliative care can be provided at any time in a child's cancer experience and anywhere. It can be delivered while you are in the clinic, while you are in the hospital staying overnight, and we can deliver it to you at home.

Some people confuse palliative care and hospice care, and those are 2 different things. So palliative care can be delivered concurrently with cancer-directed and cure-directed therapy.  And generally, when we talk about hospice, it is for patients and families who have started to understand and recognize that perhaps their cancer might not be curable, and they are making the courageous and loving decision to switch gears and focus more on quality of life without continuing cure-directed therapies. Hospice care, like palliative care, can be delivered in a bunch of different settings. And most times in pediatric hospice care, we think about delivering it to a child in their home and within their home community.

Some of the things that parents often ask us when we're talking about palliative care for their kids with cancer is, how do I know if my child is ready? And how do I ask for it? The answer to the first question is that again, your child can be ready for palliative care at any time. And it's really intended to help you navigate the heart of having a child with cancer. And that can, again, include anything from making complicated decisions, processing complicated information, making plans for you and your child's future, and managing complex pain and symptoms. How you ask for it is in most pediatric cancer centers, there is an embedded palliative care team that can help you. So you can ask any of your doctors and nurses and other folks who are taking care of you and your family.

The last thing I'll say about palliative care is that it is a subspecialty team of experts who are good at all of these things like communication and pain and symptom management. Most pediatric oncologists do what we call primary palliative care, and that is they help support you in all of these things, too. So they help talk to you about complicated decisions and upcoming plans. They help talk to you about what might be coming with your child's symptoms, and they really help you navigate the cancer experience. And so what we try to do in pediatric palliative care is partner with you and your oncology team so that we just become a bigger team, thinking more holistically about all of the ways we can support you and your family. I think, in the end, the message of all of this is that every person taking care of a kid with cancer is trying to help that kid to thrive. And pediatric palliative care can be a really important resource to help kids to do that to the best of their abilities.

So another question that we can hear from parents and families is what to expect when the palliative care team gets called. I think at a minimum, the expectation is that you will meet more people who will be really curious about your family and your child. They will ask a lot of questions about what matters to you, what are your values. They'll ask you questions about what is happening with the child's illness, what are your worries, what are your hopes, and what they do with all of that information is they help you process it, and they help translate it into something that can work for your child's overall cancer care. Part of meeting a palliative care team is always meeting all of these different members of the team, so you'll meet doctors, nurses, nurse practitioners, social workers, perhaps chaplains, child life specialists, psychologists, all of the folks that I previously mentioned. And the reason we have those big teams is because we recognize that each member of that team can help you with a different part of your whole cancer experience. And so for example, if your faith and your spiritual community is a really big part of how you are coping with being the parent of a child with cancer. We want to connect you with that part of your own strengths and resources and figure out how to support you while you are under our care in the hospital setting.

So one other thing that pediatric palliative care teams can help with is talking within your family. So sometimes we get questions about how do I talk to my child about what's happening, or how do I talk to my child's brothers and sisters about what's happening? Maybe it's a, how do I support their brothers and sisters? It could be about the challenges of being a parent with one kid in the hospital and others at home, and how do you maintain your identity as a parent? How do you still be a good parent to a large family when you have one child who's really sick with cancer? And we in palliative care really can help you with that with all of the different resources and team members that I mentioned, and we can help you talk to your other kids. We can help your kids talk to each other. We can help you think as a parent about how you can navigate the situation that no parent could ever have planned for until they're in it. The other thing that we do within palliative care and the other thing you can expect is we partner very closely with your oncology team, not to replace them or make decisions on their behalf, but more to help them know you better. And so what we do is we talk together about what we are hearing from you, about what your child might need. We provide advice, we provide recommendations, for example, for how to manage perhaps complicated symptoms. We might have conversations with you and your oncologist together in the room to think as a bigger team about how we can support your child's well-being. And we'll often ask you questions in the midst of all of this about what you think is important for your child, how you want to spend your time, how you define your child's quality of life, and how we, as a larger program, taking care of children with cancer, can do better to make sure your kid is thriving for as long as possible.

ASCO: Thank you, Dr. Rosenberg. Learn more about palliative and supportive care at www.cancer.net/palliative.

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