Dialogues

Nov 23, 2024, 16:07

Beyond the Cancer Diagnosis: Dialogue with Lauren Fryzel, Hosted by Adrian Pogacian

In the latest episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian discusses about Adolescent and Young Adult cancers with Lauren Fryzel, Senior Manager, Patient and Community Outreach at The Leukemia and Lymphoma Society.

Lauren Fryzel is the Senior Manager of Patient and Community Outreach for the Leukemia and Lymphoma Society (LLS) in Michigan and Indiana. A Hodgkin’s Lymphoma survivor, Lauren leverages her personal experience to support blood cancer patients by connecting them with vital services and resources.

A graduate of Grand Valley State University’s School of Social Work, she is dedicated to empowering patients and caregivers through education and access to quality care. Additionally, Lauren serves as the AYA Community Advocate for SWOG Cancer Research, advising on strategies to engage the adolescent and young adult cancer community. In her free time, she enjoys spending time with her family and pursuing creative hobbies.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

00:12 Introduction
01:55 AYA Cancer Overview
04:30 Advocating for AYA Cancer Patients
07:30 Rising Cancer Incidence in Young Adults
09:40 Late Diagnoses Awareness
12:25 Key AYA Challenges
18:45 Communicating Through Cancer
20:45 AI and Tech in AYA Care
24:00 Conclusion

Adrian Pogacian: Hello everyone, welcome to a new edition of the interview series Beyond the Cancer Diagnosis. Today my guest is Lauren Fryzel. She is a patient advocate and in the last episode I approached the childhood cancer.
Today with Lauren we will be talking about adolescent and young adults or AYA and what it’s to be an advocate or what it’s to be someone who really care about the destiny of this vulnerable category of people. Lauren, thank you very much for accepting my invitation.

Lauren Fryzel: Yes, thank you so much for having me. I’m excited to talk all about adolescents and young adults.

Adrian Pogacian: Great. As I usually do to my interviews because I’m a psychologist or better said clinical psychologist but our audience is from all over the world and many of our audience are patients, I ask every invitate to explain or develop the field in which he works. So in your case you are working with adolescents and young adults. So firstly I would like you to explain in terms of age, especially in terms of average age of cancer diagnosis at what we refer when we are talking about adolescents and young adults.

Lauren Fryzel: Yeah, so everyone around the world kind of has a different age set for adolescents and young adults or AYA. And the most common is according to the National Cancer Institute here in the United States is 15 to 39. So really anyone from ages 15 to 39 or under 40 is a great way to say that is considered an adolescent and young adult cancer patient.

Some of the most common diagnoses that we see in this age range as well is breast cancer, thyroid, testicular and melanoma. But we also see a large number of brain, cervical, colorectal is a big one and growing blood cancers like leukemia and lymphoma and sarcomas are really common among this age range as well.

Adrian Pogacian: You mentioned about different types of cancers. Could I ask you to tell us what is the proportion between females and males?

Lauren Fryzel: I would have to look that up for you. I know that it’s common like for obviously breast cancer more common in women, testicular more common in men, excuse me. I’d have to look that up. I’m not sure around the world what that breakdown would be, but I could get those numbers for you.

Adrian Pogacian: Yeah, no, I asked this because I saw statistics that till 2030 the cancer cases in males will increase extremely. And I was wondering maybe how is the situation regarding the young adults, especially because this is the tendency to live longer. So that means that we are more vulnerable to develop a type of cancer. We are talking about world and living. So nowadays times are quite chaotic, I can say. So AYA, it’s probably the most vulnerable category in facing cancer. What are your thoughts with regard to awareness and advocacy for AYA?

Lauren Fryzel: Yeah. You know, a lot of people still don’t understand that adolescent and young adults are a special category of patients. Not a lot of awareness. There’s growing awareness, but not as much awareness as we’d like to see that ages 15 to 39 have special needs and special issues that they’re dealing with. They’re absolutely an underserved demographic within the cancer space and the oncology world.

And a lot of providers around the world, and especially here in the United States, do not specialize in this age range. So, they may not understand when someone in that age range comes to their clinic what the needs are of that patient. And we can talk about advocacy in this space in two ways.

So the first is, you know, patient advocacy, kind of like what I’m doing now is just bringing awareness to adolescents and young adults, the fact that we exist and we have specific needs. I mean, it was just in the 90s that we identified this age range as its own special population.

So it’s not been that many years in the world of cancer and oncology that we’ve actually been able to focus on adolescents and young adults. And so a lot of what I do and what a lot of advocates do is just raising awareness of the issues like we’re going to talk about today and focusing on, excuse me, focusing on awareness within, you know, patient world, but also in the provider world.

But we can also talk advocacy in terms of laws that protect patients. I know here in the United States, especially, we’re always talking about local forms of advocacy, national forms of advocacy. When it comes to legislation and all of that around protecting patients, making sure that they get access to the care that they need. For example, here in Michigan, in the United States, we are focusing on how can we protect fertility preservation for patients?

How can we make sure that that’s covered under insurance? These are things that also come to mind when it comes to advocacy in adolescent and young adults space. So there’s lots of advocacy needed, lots of communication needed in this space.

Adrian Pogacian: And out from this big field of advocacy, what are the key issues or facts that will spur change? Because it is a need of change in approach to the cancer patient.

Lauren Fryzel: Yeah. The thing that I truly hope that the oncology world is paying close attention to is the rise in cancer incidents among this population globally, especially in that 30 to 39 age range, we’re seeing a rise in cancers. And unfortunately, we don’t have any definitive reasons as to why this is happening.

There’s a lot of suspected reasons environmentally, all of that might be why it’s happening, but we need more research as to the reasons why we’re seeing an increase in cancer in those under 40. But regardless of that, the issue of young adults is going to continue to increase. So as you said, we are surviving and we have long, many years to survive, right?

So this issue is not going to go away. With the higher incidents, we’re going to see more survivorship needs and more long-term care needs, more secondary cancers and late effects happening in the road. So I hope that we’re paying attention to this rise in cancer incidents, because I think it’s going to just increase the number of issues that we see. We’re already an underserved population. And with this number increasing of us coming out, coming on, it’s going to continue to get worse if we don’t find some strategies to handle this population in the future.

Adrian Pogacian: And the big risk is that we as specialists, we will not do what we are trained for. So we’ll have to do many different things that maybe we are not specialized with. So we agree that there are some unmet needs for adolescents and young adults. And you mentioned about also the laws, that means the state. So to whom you have to go to the message, or to whom, who should hear these needs of AYA?

Lauren Fryzel: Yeah, twofold. So I think it’s really important that truthfully everyone in the oncology space pays attention to adolescent and young adult issues. This is not going away, like we said. It’s going to take all hands on deck to really tackle the issues for adolescents and young adults. I also think it’s really important as a general population, people ages 15 to 39, to understand their responsibility and paying attention to their health and getting their regular checkups. Because my concern as well here is that patients are getting diagnosed too late, because both the patient themselves are like, oh, it can’t be cancer, I’m too young for that.

And making assumptions about their health or afraid to go to the doctor because they don’t want to know what’s going on. And the other side is the provider side of, it can’t be cancer, they’re too young for that, right? Or missing the signs. And so we’re getting a lot of late diagnoses as well. So everyone needs, everyone needs to hear this message, in my opinion.

Adrian Pogacian: You said about the diagnosed too late. For example, in Romania, my country, it is a gap of two years from the first symptom to the diagnosis, not the treatment, but to the diagnosis. So two years, it’s enormous. And then there are more, maybe than one year, two years, three years, till they start the treatment. So maybe in five years, that patient may be not making. So this is the reason that we always say that oncological patients, they don’t have time.

They don’t, I said that they don’t have space. So they just need abundant and confident information. Anything that, let’s say, could save them, live longer and struggle with this oncological diagnosis. As any other field of oncology, I think also you as patient advocate have a lot of challenges. Could you name at least the most important or the general challenges you met in your everyday activity?

Lauren Fryzel: Absolutely. I mean, there are many, there are many, right? But a few that come to mind, the first, the very first is finding the right care team, right? So at least here in the United States, many adolescents and young adults end up in their local community clinics, which logistically might be the best option for them. They’re going to continue to go to school or go to work. And maybe that’s right there in their backyard, but that is not necessarily the best place for them because the providers there may not be educated on how to support them in the best way.

So I always encourage families who are experiencing an adolescent young adult diagnosis. I encourage that patient to go and seek a second opinion at a specific AYA clinic, if that’s available to them. So that’s one of the big, the first things that happens when you get a diagnosis is, do you have the right care team around you?

The second, at least here in the United States, it’s a big deal and globally is the financial toxicity that’s attached to dealing with a cancer diagnosis. Whether that’s, you know, for us here in the US, that’s dealing with insurance and high out-of-pocket costs and all that. And you’re at the beginning of your career, or you may not be into your career yet. Not a lot of savings. You don’t have that savings to fall back on and be able to afford that. Not only that, but it’s going to disrupt your career or your school. And so you have to take time off. And so supporting yourself can be really difficult.

So the financial toxicity in this group is enormous. And then another big concern is fertility preservation. So for many, I mean, cancer treatment is going to affect fertility and their options. And the patients are not always getting the information that they need. I know for me, when I was diagnosed, it was a pamphlet about your fertility, kind of slid to the side and said, you’re probably fine.

That’s not an in-depth conversation that needs to be discussed on such a big deal for a lot of these patients where they are not old enough or not ready to talk about having a family, but they don’t want that option closed off to them. So being able to have those conversations in the clinic is so important and so misunderstood, right? Like you said, doctors, oncology is focused on oncology and not on treatment.

They don’t know about fertility and preservation. They’re not specialized in that. So being able to have that conversation is really important. And it’s another reason why I tell patients to really go into the AYA clinics, if they’ve got access to that, or go to a specialist that understands those conversations, because they’re really, really important.

There’s a lot of options coming out around fertility preservation, but if you’re not a specialist, you’re not going to know how to offer those, right? And then two more concerns that I do really want to highlight. The first is the emotional and social aspect of an adolescent and young adult diagnosis. So if you think about someone who’s 15 or someone who’s in their 30s or whatever, you’re in a very transitional time of life, right?

So especially for the younger end, so 15 to your 20s, you’re just starting your career, you’re going to school, you’re doing all of these great things and life is changing and moving so fast. And a cancer diagnosis really disrupts all of that developmentally. And for those on the older end, you might be a new family and just starting your family or have young kids at home and can really disrupt the flow of all of that.

And so many adolescents and young adults who are diagnosed with the cancer, of course, are going through treatment and doing all that, but they also are experiencing high rates of distress. And so they experience a lot of isolation and just emotional issues. And so it’s really important to understand how to support them in that way as well. And then finally, we’ve already kind of alluded to it, but survivorship care planning with this group is really important.

So along with pediatrics, we have so many more decades of life to live. And so it’s really important to have great long-term follow-up care with this group, especially with longer and longer we are living. And we don’t necessarily know all the long-term and late effects that might come down the road into our 60s and 70s and into our elderly years. So as a result of our treatments early on in life. So it’s just important to have great long-term follow-up care with this group. So those are some of the main concerns that I see. I know there are many more, but those are the big ones, in my opinion.

Adrian Pogacian: You mentioned live longer. As a clinician, a psychologist or psych oncologist, we have one mission just to let the patient know that there is time. That’s the most important one. And the second one is to provide hope. So as we as specialists, we have to give hope and to express the idea that there is time. Because after the cancer diagnosis, you know, the first emotion is fear. And it’s fear that I don’t have time. So you mentioned these categories before.

And I have to ask you this. You do a lot of communication work, more or less, being an advocate for patients. So with whom it’s, let’s say, harder to communicate? With patients, with caregivers or with the other part? I mean, medical team or, I don’t know, insurance companies or with whom it’s harder to communicate?

Lauren Fryzel: Yeah, I think it depends too on where we’re sitting at in these 15 to 39 ranges. Because yes, we’re all lumped into this AYA category, but a 15-year-old and a 39-year-old are in very different parts of life. So I’d say for the teens and early 20s, it can be very difficult to communicate with your medical team because you don’t know what to ask. You don’t know what your needs are. You’re still figuring yourself out as a human and as an emerging adult.

And you’re having a hard time navigating through this. You’re relying on your parents a lot. I think it’s also incredibly difficult sometimes to communicate with your loved ones, no matter the age in this range, because it is such a jarring experience.

I know for me, communicating with my parents was probably the hardest and sometimes the easiest because they’re my parents and they love me no matter what I say. But it was also so hard to be incredibly vulnerable and tell them what my needs were. It’s difficult. It’s all so difficult. And then as you progress through this age range, communicating with your loved one, with your partner, with your children, your young children is an incredibly hard task to find the words that are needed to communicate through this. It’s a challenging time.

Adrian pogacian: You mentioned challenging time. We are living in an era of digital interventions, of a lot of e-health and electronic devices and so on. And of course, we can’t ignore artificial intelligence. So in this context, how do you see the future of survivorship, care with focus to AI?

Lauren Fryzel: Yeah, I find it incredibly, it’ll be very interesting to see how artificial intelligence continues to play a role. I’ve seen a few interesting studies. One that I’d like to point out is Dr. Zhang from University of Michigan. He had a really interesting study analysing the use of technology when it comes to psychosocial outcomes of adolescents and young adults. So it was really an app that was able to be there for patients whenever they needed and kind of like a chat of how things are going.

And it’s just someone to talk to essentially, while they’re in a moment of crisis or need some support. And it had really promising results. They actually found that adolescents and young adults utilize the chat feature kind of in those wee hours of the morning when they’re up in the middle of the night and they aren’t able to sleep and they’re thinking about all of the things and have no one to talk to. They’re not going to wake someone up to talk to them, but at 2, 3 a.m. when they really need that help, the app was there to be able to help them, help support them psychosocially.

So I’m really fascinated about where that’s going to go. And just as we continue to make e-health and all of that, I’m also really interested in the use of wearables and technology in health implications across the spectrum. So not just in the cancer world, but in health in general, it’s really taken off in many years. But as things like the aura ring or things like that continue to become popular, I’m fascinated to see if we’ll be able to catch things earlier.

So technology is exciting, a little scary at times with how fast AI seems to be developing, but I think it can have really beautiful implications in addressing some of these very ways. So excited to see where the future of that goes.

Adrian Pogacian: Yes. And to end, let’s say the interview in a positive note, adolescents and young adults, they should take the information from reliable sources. I, with every occasion I mention this because nowadays, and especially in this category of adolescents, there are a lot of misinformation about cancer diagnosis, process care. So with this occasion also, I raise awareness that they should take information from reliable sources. Do not be ashamed or ashamed to talk with parents, with friends, to ask for help, but just to be correctly informed.

Lauren Fryzel: Yes, please. Please seek reliable sources for your information. I know a lot of people in this age range get their information from social media. Make sure it is a reliable source that you are getting information from. I agree wholeheartedly.

Adrian Pogacian: Yeah. Lauren, thank you very much for joining this episode of my interview series. It was very interesting to approach this vulnerable category with so many things that they have to prove to themselves, to life, but also with so much challenges, maybe too much challenges for their age. This is my opinion. This is a category that have to face too much struggle for their age.

Thank you. Good luck in your activity. And we need people involved. This is the most important aspect of psycho-socio-oncology, to have people who can make a difference within communities, within cancer communities, because it’s not easy. Times are changing. Technologies are evolving. So we have to be there, to be on the same page as they say. Thank you very much and good luck.

Lauren Fryzel: Thank you so much for having me.

Previous editions of “Beyond The Cancer Diagnosis”

Edition 1: Beyond The Cancer Diagnosis: Psycho-Oncological Aspects Of Kate Middleton’s Diagnosis

Edition 2: Beyond The Cancer Diagnosis with Sonia Amin Thomas – Survivorship

Edition 3: Beyond The Cancer Diagnosis: Dialogue with Wendy Lam, Hosted By Adrian Pogacian

Edition 4: Beyond The Cancer Diagnosis: Dialogue with Camille Moses, Hosted By Adrian Pogacian

Edition 5: Beyond The Cancer Diagnosis: Dialogue with Tihana Gašpert, Hosted By Adrian Pogacian

Edition 6: Beyond The Cancer Diagnosis: Dialogue with Amanda Balakirsky, Hosted By Adrian Pogacian

Edition 7: Beyond The Cancer Diagnosis: Dialogue with Dr. William Breitbart, Hosted By Adrian Pogacian

Edition 8: Beyond The Cancer Diagnosis: Dialogue with Dr. Alberto Costa, Hosted by Adrian Pogacian

Edition 9: Beyond the Cancer Diagnosis: Dialogue with Prof. Sophie Lebel, Hosted by Adrian Pogacian

Edition 10: Beyond the Cancer Diagnosis: Dialogue with Darren Haywood, hosted by Adrian Pogacian