Aug 3, 2020

Guest host, Dr. Anne Katz, PhD, RN, FAAN, a sexuality counselor and clinical nurse specialist at CancerCare Manitoba, discusses taboo topics and the unique challenges of life for adolescent and young adult patients with cancer and survivors with Dr. Brad Zebrack, PhD, MSW, MPH, a specialist in social work oncology at the University of Michigan's Rogel Cancer Center.

Transcript

Dr. Anne Katz: Welcome to the ASCO Daily News podcast. I'm Anne Katz, and I'm delighted to be the guest host of the podcast today to discuss the challenges faced by adolescents and young adults who are cancer survivors. I work at CancerCare Manitoba, where I counsel many such patients and survivors who experience sexual and relationship challenges.

I'm delighted to welcome Dr. Brad Zebrack, a specialist in social work oncology at the University of Michigan Comprehensive Cancer Center. Brad is a longtime colleague of mine and has helped countless people navigate the unique challenges of living life as a young cancer patient or survivor. My guest and I report no conflicts of interest relating to issues discussed in the podcast.  Full disclosures relating to all Daily News podcasts can be found on our episode pages.  Brad, welcome, and thanks for making the time for this today.

Dr. Brad Zebrack: Yeah. Thanks, Anne. Thanks for the invitation to be here, especially when we get to talk about the things that nobody likes to talk about, those taboo topics.

Dr. Anne Katz: Absolutely, love those taboo topics.

And I love the people who are prepared to talk about them, that's the other thing. So you know, your research and clinical work has focused on helping countless adolescents and young adults navigate these unique challenges of living life as a patient or a survivor. What are you working on these days?

Dr. Brad Zebrack: So right now, I've got a project going on at the University of Michigan Rogel Cancer Center in which we're looking at teens and young adults who report using reproductive health and fertility preservation services, as well as those who report not having used those services, and to try and get an idea of what some of the barriers and challenges are to help promote and facilitate their use and benefit of those services. And one of the things I really appreciated about the taboo article was that it did touch upon the experience of sexual and gender minorities, an issue that I think has really not been captured so well in the clinical and research literature over the years as attention to fertility preservation, oncofertility, has really come to the fore. And I that's great. I think that's really important.

But at least at the clinical level, I think a lot of young people who are going through-- you know, one of the aspects of growing up and being a teenager or young adult is identifying, being comfortable, becoming comfortable with yourself, and becoming comfortable with who you are, that notion of identity development. So things like sex, sexuality, sexual identity, gender identity are rather fluid and change for young people. So seeing that addressed in that article I think helped to really attend to some of the current knowledge and science that we now have a better understanding of sex and gender identification in young people.

Dr. Anne Katz: So just to contextualize the article that we're talking about, the ASCO Virtual Education program will feature a presentation about the taboo topics in adolescent and young adult oncology and strategies to help oncology care providers managing the challenging conversations with this population and that we have to be having with them. So the corresponding article was just published in ASCO's Educational Book, which is an amazing resource for oncology care providers. I don't want to steal the author's thunder. And I really encourage everybody to read this. But let's talk a little bit about these taboo topics, specifically those that are not mentioned in the article and that are so important for us to talk about. So Brad, what do you think is one topic that's missing from this article?

Dr. Brad Zebrack: Well, after I read the article, one of the first things that jumped out to me was the issue about religion and faith. And my experience and working with teens and young adults and actually cancer patients of all ages is that, for many, faith and religion is an asset. It's something that helps them deal with the adversities of life.

And there's a whole body of literature around, particularly for older adults and especially at the end of life, how being able to rely on faith and rely on religion is really important and really helpful to deal with these adversities. For young people, it's different. Because again, just like sex and gender, like I was talking about earlier, developing a religious identity and a faith basis is also fluid and changing for young people.

I remember once talking to a young woman. She was 25 years old. She was just a couple of years out of therapy for Hodgkin's lymphoma.

And she was telling me about how growing up she was very involved in her youth group, her church youth group, and how being part of that youth group was so important and going to church and having a strong basis and faith in her religion was important. But when cancer hit, it was very disturbing to her, because she found herself questioning her faith in God.

So questioning the faith was an existential challenge to her that she found very distressing. And the fact that she was questioning her faith was doubly distressing to her. So you know, I think that any kind of distress like that for young patients is going to have implications for their adherence to therapy and their ability to cope with the myriad challenges that accompany a cancer diagnosis and its treatment.

Dr. Anne Katz: I think that's a really good point. And there's certainly literature that points to the role of faith in women with breast cancer, particularly in women of color, and how that friendship and those bonds that are created and really helped people through the experience. So how do we talk, or how do we ask or assess faith in young patients? Certainly, I'm kind of out as a woman who is Jewish, I'm quite secular. But I'm pretty out about it.

And it suddenly informs a lot of what I talk about particularly regarding end of life issues. And I know that sometimes when I say to somebody, yeah, I'm Jewish and my faith says whatever, often you can actually see a little start. It's something that depressed people are not really used to talking about. And why aren't we?

Dr. Brad Zebrack: Yeah, a couple of things. I think in some ways health providers are not trained or prepared or have the time to sit and listen with patients as they talk about the different ways that cancer is affecting their life. Part of this is just a function of our crazy health care system. Well, you're up in Canada-- I'm down here in the US. And we certainly have a lot of challenges down here in our system.

But you when you raised the question about how do we talk to the young people, I think it's more about listening to them. I have found in both my research as well as in my clinical work over the years that just sitting down with cancer patients and asking them to tell me about how is cancer affecting your life right now-- and just to let them talk and let them talk. And you know, when I think back to this young woman who was telling me about these faith challenges that she was having, I was sitting down with young people and just asking, how is cancer affecting your life right now?

And they will share. And they will open up. And I think that another key piece is to resist the desire to want to fix things for young people.

I think it's just the listening and the ability for them to have that opportunity to talk about it. And then particularly the other thing I've done in this adolescent young adult space is to connect young people with other young people. Having them then feel like it's OK to have these conversations, whether it's in a retreat or a workshop or a camp program or even a support group that just involves other adolescents and young adults, just to be able to facilitate a space where those young people can talk with each other about some of these issues I have found to be very powerful and even have some of the empirical evidence that shows that participating in these programs and retreats really contributes to improved ability to manage symptoms.

Dr. Anne Katz: So that's actually a perfect segue way to something that I've been thinking about. I recently participated as a speaker at a virtual conference for young adults with cancer. And one of the questions I was asked was, if you have sex with someone, do you have to quarantine or isolate for 14 days afterwards, and other questions just about the isolation that I think young people, particularly those who are not living in large metropolitan areas, they may be the only person in their rural area or perhaps small town that they know has cancer.

And that isolation and feeling different is really distressing for them. So what would you tell a young man or woman who really feels isolated? How do you advise them?

Dr. Brad Zebrack: So I think the first thing that I know that they're going to do is they're going to go online. And they're going to use their social media accounts and networks to try and connect with others and find information as well as support. So knowing that that's going to happen, I find that as a health provider it's my responsibility to make sure that they, to the best of their ability, can sort through all that information and be able to distinguish resources and information that's going to be helpful from resources and information that, in essence, is snake oil and could potentially be harmful.

I think we're talking about engaging young people in ability for them to develop some critical thinking, that when they're online and they're looking at all these resources to do things like, well, what's the source of the information that's coming at you? Is it a reputable organization? Just to give them some of the concrete skills-- so that they can sort through some of this stuff.

Because I think that the biggest current concern I have is that they're going to be out there in that world, and every piece of information is evaluated equally. And we know that that's not the case, that there are reputable sources. So I think on the provider side what we can be doing is developing resource lists. Social workers are very keen and trained to keep these lists updated and provide these reputable lists to young people, so we can guide them to where to find safe and reputable information and support online.

Dr. Anne Katz: Yeah. And I think maybe this is a good place to put a plug in for organizations such as Teen Cancer America and Stupid Cancer that have done so much for this population in a relatively short period of time, where individuals can find like-minded people, people who have been through the same experiences. And so much of the work is done online anyway that this could provide them with a good fit for education, for support, and perhaps even for dating. And certainly I know of young couples who have met through online fora such as this.

So let's get back to the article again. So the article deals with sex. It deals with money, financial toxicity, certainly deals with end of life and death issues. And you've certainly raised the topic of faith.

Can we talk a little bit perhaps about trust, which I think underlies everything that we as oncology care providers do? And was it really addressed? It underlies I think a lot of what is said. But how do we develop trust with these young people who often have every reason not to trust us?

Dr. Brad Zebrack: Yeah, that's a great question, Anne, and I'm glad you're bringing attention to that. Because particularly for adolescents and young adults, cancer is a really rare disorder. So when they start to experience symptoms and they go to see a doctor, oftentimes what these young people experience is, if they're reporting a pain in their leg, for example, the doctor is not going to obviously jump to the first thing. Oh, you have cancer.

So it may be written off as something like growing pains. So what is a common experience amongst young people is that they're reporting these symptoms. They're reporting these conditions, and they're being minimized or discounted by a number of different doctors and, for most of them, appropriately so.

But for those who ultimately get diagnosed with cancer, what they've now experienced is a number of physicians, a number of health care providers, who have discounted their experience. So now that when they're told that they have cancer, many of them have now developed a distrust of the health care system and a distrust of doctors. And I think that work then needs to be done to re-engage and reinforce that sense of trust amongst young people.

I think we're also in an era now where we're really hearing an emergence, particularly from young people of color and persons of color, that there's a whole other aspect of experiencing discrimination and racism in institutions, whether it's health care systems, educational systems and so on, which makes it doubly imperative for us within the system to reinforce and encourage and build trust with patients.

Dr. Anne Katz: So how do you build trust?

Dr. Brad Zebrack: Oh, boy. Again, I mean, the first thing that comes to mind is listening; to just sit down and spend some time listening to the concerns of our patients. Given that we may have just given them a cancer diagnosis, given that we may just have told them the prognosis of something say, like, high risk leukemia, which maybe has a 50% or less prognosis for long-term survival; I think we just need to then take a breath and step back and let these young patients process this and listen to them about their concerns about what aspects of their life they think are now going to be impacted and where we may be able to provide some support and assistance.

Dr. Anne Katz: So as you're talking about this and as we were talking a little earlier about listening, I can hear some of my oncology physician colleagues say, 'yeah, but I don't have the time. I have x number of patients to see in x number of hours. And I just don't have the time.'

And I think you and I both, as psychosocial providers, we have that gift. We can. We can ask the question and sit for 20 minutes and listen. And I think that that is just such a disgrace, honestly, that physician colleagues, many of whom would like to talk, would like to listen, just don't have the time to do it.

And then you'll end up in a situation where that is the young person who is constantly calling. And then they get labeled as being needy or difficult. And that carries through the rest of their treatment, which is really, really sad, because they just want information. They want support. And it sets them up for really a long period of treatment where perhaps they are labeled.

Is there anything else that stands out for you from this article? It certainly touches on gender and sexual minorities. It certainly touches on some of these big issues. Is there perhaps, as we get to the end of this, some of the subtleties that stand out for you, particularly because of the body of research that you have provided for us?

Dr. Brad Zebrack: Again, one of the reasons I so appreciated the article because it was really elevating issues of sex, money, death. Whether we want to talk with young patients about this or not, these things are on their mind. And just now when we were talking about physicians maybe feeling like they just don't have the time to do all this engagement or to do all this listening, and I guess what I would say to them is, but you don't have to.

Addressing cancer requires a team whether you're working in a large academic facility where you've got a team of collaborators, including nurses and mental health professionals and therapists. But even to the providers who are working in small community settings that maybe don't have right hand availability to mental health providers, I would encourage them to utilize the resources that they have in their community and refer their patients out to some of these other supportive services either in their community or online because it does take a community to address these aspects of cancer that are not just physical, but they're psychological. They're social. They're faith-based. They're existential.

Even if you're assessing aspects of sleep, for example, or pain, what we may think of these as physical symptoms of cancer, they have psychological and social implications. And there are evidence-based psychological and social interventions to help address things like fatigue and pain. So again, we've got to think about cancer care as a shared and collaborative approach and even to draw upon our colleagues in adolescent medicine who have some of that orientation to the human developmental aspects of young people and how that's a whole other layer of experience.

But back to your question, death, sex-- you know, those of you who might be Woody Allen movie fans, every movie he ever made -sex and death were at the forefront. And young people are thinking these things whether we ask them about it or not.

Dr. Anne Katz: Yeah. And I think further to your point about needing a community, a village, a city to support these young people is also recognizing that for the younger patient, their family needs support. I can imagine nothing worse than being the parent of an adolescent or young adult who has cancer. It is more than life altering, right? It turns out our ideas of how life is going to go completely on its head. And then for the perhaps the young adult who's a little bit older, let's think about their partner and what they go through when often they are really ill-equipped to deal with these kinds of issues. Our patients are a village in and of themselves, and we need to include their supports.

And I think sometimes we perhaps view parents as infantilizing and sort of getting in the way of some of the stuff that we have to do and not allowing that adolescent or young adult to reach those developmental milestones that they need to. And I think sometimes it's really hard to sort of think beyond the patient and recognize that their friends, their social circle are stunned, don't know what to say. And often, friendships fall away.

Dr. Brad Zebrack: Yeah. That's such a great point, Anne. Because again, when you think about the relatively few adolescents and young adult patients that'll be seen in oncology practices compared to tons of older adults, older people, they've lived a life. And they've had experiences of dealing with adversity. And every time you have an experience of adversity in your life, you learn ways to cope. And then you can apply those learnings to the next time that some other challenge comes up in your life.

But for young people, they haven't had these experiences and these abilities to build up sort of a set of coping skills. So when we think about relationships, there's the proverbial couple walking to the altar and getting married. And it's like, we're going to be together til death do us part, right?

And I think the young people are thinking, well, the health challenges and death, that's going to come later. That's later in life. But when it hits them early in life, they really lack the coping skills, the ability to communicate within a couple and really oftentimes can benefit from some outside support, some outside experience to help them negotiate those relationships.

Dr. Anne Katz: Yeah. So you know, it looks like we have to wrap this up now. Certainly, I hope this has given some food for thought to those who have listened to this podcast. It really has been a pleasure to talk to you once again. Thank you so much for sharing those valuable insights that I think can be practiced changing and certainly life changing for those that we serve. So thank you so much, Brad.

Dr. Brad Zebrack: Yeah. Well, thank you, Anne. Thanks for the invitation and also for the great work that you've done for years in providing support to this population as well.

Dr. Ann Katz: Thanks. And thank you to our listeners for joining us for this episode of the ASCO Daily News podcast. Please take a moment to rate and review this podcast on Apple podcasts. Thank you.

Disclaimer:
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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

COI Disclosures: 

Dr. Anne Katz - No Relationships to Disclose

Dr. Brad Zebrack - No Relationships to Disclose