Cancer in Young Adults: Addressing Challenges, Providing Support

Podcast Transcript

Speaker 2:

Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now here's today's host.

Dr. Seth Rotz:

Welcome back to Little Health. I'm your host Dr. Seth Rotz, a pediatric hematologist oncologist at Cleveland Clinic Children's. Your teen and young adult years are a time of significant growth and change. A cancer diagnosis during this period not only disrupts physical health, but also the crucial development of your independence, identity, and planning for the future. On today's episode, we'll explore these challenges and offer support. Our guest today is Dr. Stephanie Thomas, a pediatric hematologist oncologist at Cleveland Clinic Children's who specializes in AYA, Adolescent and Young Adult cancer. Welcome to Little Health, Dr. Thomas.

Dr. Stephanie Thomas:

Thank you so much Dr. Rotz, it's really great to be here.

Dr. Seth Rotz:

Dr. Thomas, can you tell us a little bit about yourself, what your role in helping folks with AYA cancers is, how you kind of went in that direction and what your background and training was for that?

Dr. Stephanie Thomas:

Sure. So I am also a trained pediatric hematologist oncologist like yourself, and when I was in my pediatric residency training, my cousin who was 26 at the time, was diagnosed with widely metastatic cancer. And was, when I was going through residency, I was watching him and his family go through the process of finding clinical trials, traveling around the country, doing everything they can to help this, you know, bright light, twenty-six-year-old stay alive. Um, he unfortunately passed away with- within a year of being diagnosed. But that experience is what really led me into wanting to not only do cancer, taking care of kids with cancer as part, as a pediatric hematologist oncologist, but really focusing on this adolescent and young adult cancer population. Because as you, as you go through your training, you realize that most cancers in adults happen in people in their sixties.

Dr. Seth Rotz:

Sure.

Dr. Stephanie Thomas:

And most cancers in kids happen in kids that are really less than 10. And then there's this age range where they're kind of forgotten once they turn into teenagers and young adults. And, and that's really what helping those kids and those young adults and those teens and everything go through that process, I think was a kind of a forgotten area. And I was lucky that I was interested in this area at the same time as there was a big national interest going on and this big AYA movement was happening really globally.

Dr. Seth Rotz:

So, like, from that personal experience, you know, obviously you do this, you know, as your full-time job now, but you know, looking back on that experience, were there like clear gaps that you saw for him in his treatment? Like what, what was most noticeable for you on the patient side of things?

Dr. Stephanie Thomas:

I think for me, he really could never find his people at a cancer center.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

And I, I don't think anyone who's diagnosed with cancer is looking for their people necessarily. It's not like, oh, I'm gonna walk into this cancer ward and I really am gonna find my BFF here forever and ever.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

But he wasn't able to really find people like him that were young, that were trying to, to really go about things. And with the type of cancer he got, there was a lot of palliation and there wasn't as much focus on cure. And that is partially because it was bad cancer, but also because a lot of older people, their organs simply can't tolerate the type of intense chemotherapy and surgery and radiation that you would need to be able to really rid your body from that type of cancer. And I think the traveling around the country, the looking for people that were interested in cure and were willing to give him more intensive treatments was something that seemed to be lacking at a local level.

Dr. Seth Rotz:

Yeah. You know, one of the things you'll often hear from AYA patients or, or maybe that I'll hear is, you know, in pediatrics they're the old oldest patient, you know, in the waiting room and in adults they're the youngest and never feel like they quite, you know, fit anywhere.

Dr. Stephanie Thomas:

A hundred percent.

Dr. Seth Rotz:

Can you tell us some of the types of cancers that might be a little bit more prevalent in adolescent and young adults? Like what are the main types of cancers that you'll see in this population?

Dr. Stephanie Thomas:

When we think about adolescents, so when we're thinking about the oldest kids in the cancer waiting room, we're really thinking about things like sarcomas, for example, osteosarcoma, Ewing sarcoma, rhabdo, all sorts of different sarcomas. But when we're thinking about the youngest people in the waiting room, it flips a little bit. And the most common AYA cancer, if you go all the way up to age 39, is actually breast cancer.

Dr. Seth Rotz:

Mm-hmm.

Dr. Stephanie Thomas:

So there is an interesting mix of what we call young onset cancers, which are cancers that typically happen in older people, like breast cancer, colorectal cancer, and then these AYA cancers, which are cancers that kind of happen most prevalent in this teen and young adult time, which is like sarcomas, germ cell tumors, testicular cancer in particular, Hodgkin's lymphoma, other types of leukemia lymphomas that really kind of run the gamut where they're could be treated in peds or in adult.

Dr. Seth Rotz:

Yeah. Go- going back to the first thing you were, you were talking about with your family member about if you're treated in the adult setting, you know, certainly somebody who has a type of cancer that's maybe more commonly seen in the elderly, those older patients might not be able to tolerate treatments. So for example, you know, in my practice I see a lot of folks with leukemia. And until more recent years, if you were a, you know, a 20 or 30-something treated at an adult hospital, you kind of got a similar treatment for acute lymphoblastic leukemia as a 60 or 70-year-old. Whereas, you know, the paradigm's now shifted where they realize that a lot of these people can tolerate and do better with pediatric-inspired regimens. Are, are there some examples of that in your practice?

Dr. Stephanie Thomas:

Yeah, I think it's interesting. I think in some of the sarcomas, uh, in particular Ewing sarcoma, we, uh, can show a lot of improvement in cancer survival in our younger patients when we're able to integrally compress their chemotherapy or give it kind of more aggressively on a more aggressive schedule. And even in patients that are in the AYA young adult range, even if they can't tolerate it, if we try to do it and we get it as close to interval compression as possible, they do better as well. So it's an interesting kind of thought process of if you're even trying to intensify, if you're really trying to give these patients the, the most chemo that they can tolerate in some instances, definitely not all, but in some they can do better.

Dr. Seth Rotz:

Yeah. We'll hear frequently from families with a adolescent, young adult patient is they don't know, you know, should they be at a PEDS program? Should they be at an adult program? What do you tell families? How do you help them identify who the best oncologist or set of surgeons or institution is for their, their treatment?

Dr. Stephanie Thomas:

I think that's a really great question and it does come up a lot. So I think the way that I always think about it is disease first. So if you are a 21-year-old with breast cancer, and if you're looking to be treated either at a pediatric place or an adult place, a PEDS doc has probably seen maybe breast cancer once or twice.

Dr. Seth Rotz:

I've, I've never in my career.

Dr. Stephanie Thomas:

No.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

But an adult doctor, that is what they do day in and day out.

Dr. Seth Rotz:

Bread and butter. Yeah.

Dr. Stephanie Thomas:

Bread and butter.

Dr. Seth Rotz:

Yep.

Dr. Stephanie Thomas:

And they can take care of it. They've got the right surgeons, they've got the right people. So I always say disease first. So same example, we sometimes get some very strange diagnoses like neuroblastoma or Wilms tumor that can happen in teenagers, young adults in their twenties, even thirties. That makes sense for that person, even if they're in their thirties, to be treated by a pediatric oncologist because that is their bread and butter. And an adult oncologist has never seen that before. So disease first. Now once you do disease first, a lot of it is really looking at what your social supports are. And if you have a young adult who is 24 and just establishing themselves in their life, just getting outta college, potentially living at home, really working in their initial family unit, sometimes PEDS makes more sense because it's a more family-based type of treatment paradigm.

Dr. Seth Rotz:

Yeah. The conversations are more towards that family unit.

Dr. Stephanie Thomas:

Exactly. More in involving a bunch of different people. It's just, and that's again, it's like bread and butter, soc- psychosocial care.

Dr. Seth Rotz:

Mm-hmm.

Dr. Stephanie Thomas:

But if you are a 24-year-old and you're married and you're independent and you maybe have a kid or two, then potentially you might feel more at home in an adult practice because that is their psychosocial bread and butter. They're used to working with spouse- spouses and children and things like that. So disease first, working towards cure and then really what psychosocial kind of format fits your life the best, I think makes the most sense.

Dr. Seth Rotz:

Mm-hmm. In, in terms of treatment and developing new treatments, you know, we often hear about the importance of developing clinical trials for all patients. Why is developing clinical trials for adolescent young adults so important and, and where are the gaps there in the field?

Dr. Stephanie Thomas:

There's been a lot of work in this, which has been really interesting. I think for example, when you think about clinical trials, you start really at the biology level. And there are some gaps in the fact that we don't get tumor samples, especially in some of these young onset cancers from the young people as much. So we can't do that initial preclinical testing to see if those tumors respond the same or differently than tumors that are happening in older people. Same with the teens of cancers that usually happen in young people. I think, uh, leukemia is a great example. When they looked at the biology of some of these teenagers and young adults, they saw that there was, um, some of these, like, Icarus mutations and things that could be targeted differently and possibly treated differently, which would then give them a better outcome. So some just biology differences, we have to make sure we get those specimens.

And then going into actual clinical trials, when you're thinking about comparing a standard treatment to a new treatment, really, because some of these patients can tolerate chemotherapy more so than their older adult counterparts, kind of like the leukemia trials, making sure that you're making AYA specific trials is very important to make sure that we're treating them as intensely as possible and giving them those best survival outcomes. And then when you think about things like germ cell tumors, which can be treated either in peds or in adult, but is super, super rare, allowing trials that go across networks.

So in what the research groups that typically treat children or the research groups that typically treat adults, and making trials that actually allow you to enroll no matter where you are, increases your accrual, which therefore will speed up the fact that you can actually get the trial done, which can get your outcomes out faster and you can get your next trial started even faster. So if you, if in these super rare cancers, if we're working in these little silos and not really crossing those barriers, then it slows down research developments and then potentially can impact survival and, and cure rates for patients later on.

Dr. Seth Rotz:

One of the things you, you mentioned was the biology of different cancers. You know, for example, maybe you have a teenager with Hodgkin's lymphoma, uh, and then Hodgkin's lymphoma also happens in, you know, 50 and and 60 year olds. So is that tumor, under the microscope molecularly, does it look the same or is it a little bit different, even though we call them both Hodgkin's lymphomas? Is there something fundamentally different about those diseases? Are there some examples that you can think of where that biology in an adolescent young adult patient is maybe not what people originally expected or exactly what people expected, I guess?

Dr. Stephanie Thomas:

I, I still think of ALL as like the classic example of that.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

Where the mutational analysis really does change kind of over time from young people into older people. I think neuroblastoma is also interesting in that the, if it's exceedingly, exceedingly rare in older people and like young adults, but it does seem to have a different molecular pattern than it does in in younger people. Some of the things that we think of as, like, AYA specific tumors are so driven by one type of mutation. You think of like rhabdomyosarcoma or Ewing sarcoma when, when they have those fusion drivers. I don't think there's as many good examples of that. But I think in certain patient populations we definitely have seen that where there has been differences.

Dr. Seth Rotz:

I wanted to change gears a little bit here and and talk a little bit more about mental health and psychosocial disruptions and so forth. Can you tell us a little bit about, you know, when you have adolescent young adult patients, what that emotional toll of cancer's like, you know, what types of behavioral mental health concerns can arise from the new diagnosis?

Dr. Stephanie Thomas:

Yeah, I think this is really interesting. There's a few different kind of aspects to think about. First is that in that time period when you're a teen and a young adult with cancer or without cancer, that is the typical time that major mental health disorders show themselves. That's when you would be potentially diagnosed with schizophrenia or bipolar disorder. So you have to have that in the background, right? So there's, there's that aspect of it. And then on top of that, you are going through a bunch of life changes and they don't happen cookie cutter for everyone, right? There's graduating from high school, potentially moving outta your home, going to school or starting a a job, career development, family development, relationships, both uh, romantic and non-romantic. All of those things are kind of happening at the same time and, and you feel like you're kind of invincible.

Like this is the time where your life is like going great and everything's wonderful and you get diagnosed with cancer and everything stops. You meet your oncologist who's a jerk and tells you that you can't go to school and you can no longer go to, uh, high school football games and you can't be part of your lettering season and you were potentially planning on playing sports in college and now we wanna do a major surgery on your leg. Like, there's all these things that are happening. And so we see an increase of anxiety and depression in these patients that are this time period when they're going through cancer treatment. And we also see a lot of, I think sadness is probably the best word, that their community can kind of go away. And I'm not talking about like church community or like, like that your family community, but like your friends.

Dr. Seth Rotz:

Yeah. Your people.

Dr. Stephanie Thomas:

Your people.

Dr. Seth Rotz:

As you mentioned earlier. Yeah.

Dr. Stephanie Thomas:

You just, you they kind of forget that you're going through it and then they kind of disappear. And it's really hard during the process and also kind of like reemerging into life. And I think, you know this better than I do as the survivorship person, but I think what's also interesting is that in a subset of these adolescents and young adults, once they're done with cancer treatment, they actually are sometimes at higher risk for smoking and binge-drinking and doing these slightly disruptive behaviors because they kind of feel in one way, I already beat cancer. So, like, what's it gonna do to me? And also like, I already disrupted my normal life and now I really wanna partake in all of the normal life things.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

And so it's an interesting paradigm 'cause you would think as, like, a rational adult with a fully functional brain that, like, if you went through chemo and all sorts of things, you wouldn't wanna do these, these disruptive things. But when you're a teen and a young adult, you don't have those things yet. That's not exactly how, how you're working.

Dr. Seth Rotz:

Yeah. How does yourself or the rest of your team help patients navigate some of these disruptions to education or career? Like, you know, you as the oncologist have some of these conversations, but also you have a big team behind you to help these patients and their families. What are those conversations like? Who else is involved in those?

Dr. Stephanie Thomas:

So, thank you Dr. Rotz, because I'm very excited to talk about this. We have recently kind of reinvigorated our program and we have a wonderful program manager who has a nursing background and then a social work navigator. And they meet with all of our, the plan is adolescents, young, young adults diagnosed with cancer here at Cleveland Clinic. And they one, wanna bring community. So they want to allow to put some events together so people can meet other kids and introduce them. Two, they will help with school reintegration. We have a list of, you know, college scholarships if that's the way you wanna go, ideas for job planning, things like that. We're able to, to help with some of those type of things.

Fertility preservation to talk about potential future children. We, they, we're putting together a group, we call them healthcare partners here, which is kind of like a patient advisory committee so that the patients that have actually already gone through this can help really inform the type of programmatic changes that we wanna make. And we're hopefully gonna be get some support groups up and going if that's what the patients want. And last year we were very excited, we started prom again, which was, did not happen for a few years during Covid. Uh, we were able to put on prom for young cancer survivors to be able to, all to go together and party and celebrate. And we partnered with our two other Northeast Ohio cancer hospitals Akron Children's and Rainbow Babies, and Rainbow Babies as throwing it this year. So we're hoping that we're gonna be able to kind of move it around and get a prom every year going.

Dr. Seth Rotz:

Yeah, I heard invitations are are going out?

Dr. Stephanie Thomas:

Invitations are going out.

Dr. Seth Rotz:

Awesome. Um, you know, it's interesting you talk about some of those connections that, you know, yourself and the rest of the AY team try to make for some patients undergoing this. And I think it's interesting to me that some patients are craving those connections and other people don't want them. And I think you have to meet patients where they're at. I'm wondering if you have any thoughts about that, if that resonates with you?

Dr. Stephanie Thomas:

100%. There are some patients that you meet and they are like, "Thank you very much," very polite. "Thank you very much. But no, thank you. I'm cool." I've had young adults who are the most lovely, wonderful humans. They did not tell anyone that they were going through this. They, it was happened to be during Covid. All of their classes were online. They did not drop out anything. They continued their college classes as planned.

Dr. Seth Rotz:

Incredible. Yeah.

Dr. Stephanie Thomas:

Crazy. Like, crazy.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

Went through their chemotherapy, was, were listening to, like, their lectures while getting chemo in our infusion center. Told none of their friends. And it was literally their immediate family that knew that they had cancer. And then there are other people who, it's probably not a great word to say, become almost like cancer influencers, that are on social media a lot, are posting about their experience, are really part of that, the AYA kind of like societal social movement.

Dr. Seth Rotz:

Yeah. Influencers in the best sense of the, the word. Yeah.

Dr. Stephanie Thomas:

In the best in a good way. Good influencers.

Dr. Seth Rotz:

Truly moving the discussion forward.

Dr. Stephanie Thomas:

Exactly. Drawing attention to that this is happening to teens and young adults, this is what they have to go through. And so it really is a, a great paradigm. And I think that's why we, we try to do true navigation, which is like we ask patients like what do they want? We tell them what we have and then we check in again a few weeks later, 'cause sometimes you don't always know what you want at the beginning.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

Um...

Dr. Seth Rotz:

You gotta look at the menu.

Dr. Stephanie Thomas:

Exactly.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

Think about it for a while, and if they don't want anything then we say, "Thank you very much for your time."

Dr. Seth Rotz:

One of the things you also touched on a little bit was, and I think this is something that your AYA team, um, works very closely with, is fertility and future family planning. Is that something that's on the mind of a lot of adolescent young adults?

Dr. Stephanie Thomas:

I think it's not on the mind until it's brought up.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

Which is I think the most important part of bringing it up, because we, if you look at research that's done in this area, not enough people bring up the potential, um, infertility that you can have from cancer diagnoses and potential solutions to those infertility or at least some, some things that could potentially help. And I think once you start, once you say it to a teen, most of them, most of them wanna have the option. Um, even if they don't know for sure right now, they wanna at least be able to have the option in the future.

Dr. Seth Rotz:

And when treatment's done, so we've talked a lot about, you know, navigating the beginning of treatment in the beginning. Um, but what is it like for a young adult patient to finish therapy in terms of getting back to their life? How do those transitions work? What kinds of conversations do you have with your patients in, in that setting?

Dr. Stephanie Thomas:

Probably one of the hardest times of treatment if you talk to, uh, patients and families, the, the unknown at the beginning and then the unknown at the end. Because the unknown at the end, we, we're seeing you twice-weekly, sometimes for like nine months. And then we see you once and we're like, "Alright, so we're gonna get your line out in two weeks and then we'll see you in three months." And they look at you like, what do you mean you'll see me in three months?

So we try to do a lot of preparing before that last visit of, you know, this is kind of what end of therapy looks like, what are you thinking about getting back to your general pediatrician or your general physician and starting some of that health maintenance? What are your plans on going back to school or going back to work? Have you talked to anyone yet about maybe phasing in a few days a week at the beginning while you're getting your energy up? Are you in physical therapy or occupational therapy? Like, are, all these other things and that's just, like, the physical part of it.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

And then there's like the mental emotional part of it, which is you've been so scared this whole time of getting sick and then you're just, like, let out into the world. So we do partner a lot with our mental health providers, both psychology, social work, really anyone that that can help too. And Child Life Music Therapy is amazing at this too, of really talking about what that like real integration into life is gonna look like.

Dr. Seth Rotz:

Yeah. You know, you touched on this idea of, you know, the, the fear of the future and the unknown. And then, you know, also for patients there's fear of recurrence. There's a fear of this coming back and how that might impact their future. What are those conversations like for you?

Dr. Stephanie Thomas:

I try to introduce scan-xiety early as an actual thing that's scientifically proven because I think people think that they feel crazy sometimes, that they're getting, it's normal two weeks before your scans, even if you've kind of forgotten that you've been through all this, to start getting anxious again and for your body to start feeling that anxiety because it's real. And you know, depending on the, the cancer diagnosis that we have, I think we have different conversations because there are some diagnoses where it's very likely that cancer is going to come back.

And so I try to be as honest about that as possible without being grim. And there are other cancers where it's less likely and so your conversations are a little bit different depending on that. And I always do try to, to warn patients that sometimes they're gonna get something weird on a scan and it might not be anything. And so to take that also with a little bit of a, a grain of salt. The whole results being kind of put out into the world immediately has changed a lot of this too. So I do a lot more of that prep of, like, you're gonna read something and you might not know what it is, just send me a message if I don't, if I'm not seeing you that same day, and we'll talk through it because it can be very scary to see these words.

Dr. Seth Rotz:

Yeah. And so many of our, you know, scans and tests, we wish or, or people have an expectation that the answer is black and white, when it's, it's shades of gray. When you're, you know, maybe looking at a CT of a chest for a treated cancer is, you know, did this thing grow? Is this a little bit of a difference, you know, in the scans? And it, it's tough when those patients are seeing the results at the same time that you are and trying to prepare them that the results may not be black and white, that we may need to, you know, go down, you know, this approach or that approach to find out for sure. I find in my practice that can be helpful, but it's still, I mean, it's a really anxiety-provoking period of time. Dr. Thomas with, you know, patients undergoing treatment, particularly with surgery or radiation, you know, changes in nutrition, there can be major impacts on body image and sexuality. How do you navigate those discussions with patients and families?

Dr. Stephanie Thomas:

I think similarly to fertility, those are usually not brought up by the patient and a lot of times need to be brought up by the medical team.

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

That doesn't necessarily need to be the physician. Again, we partner a lot with different groups. I sometimes those conversations come up with, like, music therapy or art therapy, but it is, it's really hard. We try to talk about hair loss a lot because that is a huge impact for, for body image, especially in young girls. Additionally, scars, things like that. It really depends on the patient. There are some patients that you can, like, be like, "Alright, so, like, what are you gonna tell people the scar is from?" Like, you got into a bad bar fight when you were 12 years old, you, you know, like, what, can you spin it that way? And then there are other patients that look at you like, you monster. Like what are, what are you thinking?

Dr. Seth Rotz:

Yeah.

Dr. Stephanie Thomas:

So trying to really understand where their humor is and where they're, how they're really dealing with this. But the weight loss and the body changes, it's, it's really jarring to look at yourself in the mirror and to sometimes not even recognize yourself. And really, our psychology colleagues are really great about working with our patients about that because they can delve really deeper into what's going on. The other thing that's really helpful is a strong support system through all of this and really allowing families to be positive about that. Sexual health, similar, many physicians, especially pediatric doctors, are very uncomfortable talking about sex.

Dr. Seth Rotz:

I can't imagine that.

Dr. Stephanie Thomas:

Um, so you have to bring it up. And I'm not saying you bring it up with an eleven-year-old, like, I'm not crazy. But if you have a married twenty-two-year-old that you're talking to and they're talking about how their husband seems more distant, you can talk to them about intimacy and things that could be done differently that aren't necessarily sex or if they are having sex, we could talk about safe sex. Like what, if your platelets are super low and if you have like no neutrophils right now, what are the inherent risks to your body? What are the inherent risks to your partner? If you've, um, recently gotten chemotherapy, what that window should look like in terms of, of timing. If you're having like vaginal dryness or if men are having issues with erectile dysfunction, those are things that we can help with. But unless you as the, the patient's never gonna bring it up. So, and if you wanna outsource it, you can. I think that's the other big thing. If you, if there-

Dr. Seth Rotz:

So, who are some of the people you outsource it to, I guess?

Dr. Stephanie Thomas:

So urology is great to talk about male sexual dysfunction. Psychology sometimes hears about things, uh, more frequently than we do. Pelvic floor therapy is super important for some of our, our young women, especially if they've gotten radiation or if they've had a ton of chemotherapy that causes a lot of hormonal disturbances. We have actual sexual health gynecology here that can be specific for this, this patient population. So even if you ask and you know that there's an issue, you don't have to be the one to solve it. There are people that can help solve it.

Dr. Seth Rotz:

Yeah. Just getting a conversation started. Yeah. One of the things, like, that I found is interesting in, in my practice is sometimes I make assumptions about how people are feeling about, you know, body image. Sometimes I assume that they know that things are reversible. You know, they've gotten a month of steroids for ALL induction and they have, you know, really big cheeks and, you know, I've thought to myself before, of course they know it's gonna go back and they think that they're gonna look like that forever. At the same time, you have the opposite issue sometimes, people assume that things are gonna go back to the way they were and they weren't. How do you navigate some of those conversations? Like when you have somebody either presenting a physical concern or a body image issue, you know, that brings it to you, or if they don't bring it up but you bring it up. Like, what are those conversations like?

Dr. Stephanie Thomas:

I think it's really hard and I, I think it's interesting, it's a lot of like what we do on a daily basis is so normal for what we do and so absolutely abnormal for everyone else in the world that it is hard to kind of like change your brain that way. So I think when I try to do, like when I, I have, like, the hair discussion, the steroid discussion, some of like skin changes, nail changes, things like that. When I'm doing like my first chemo talk, I do talk about how a lot of that is reversible.

And then obviously when you're talking about like an amputation, to go to a very extreme part of this, we talk about how things aren't necessarily reversible or sometimes kids get like big keloids over their port scars and we talk about how like we can potentially try to have a scar revision, but you might have another keloid there again. But I, they're so patient specific, I don't know if I have a good answer because it really is trying to kind of guess where they're at and then be willing to be really wrong. Um...

Dr. Seth Rotz:

Be, be willing to be really wrong.

Dr. Stephanie Thomas:

I mean, but, like, because sometimes-

Dr. Seth Rotz:

Been there and done that. Yeah.

Dr. Stephanie Thomas:

Yeah. Patients will look at you like, that's not what I'm thinking at all. And sometimes they're like, that's not what I'm thinking and why did you put that in my head? And then you're like, oh, shoot. Like, I did not mean to actually do that.

Dr. Seth Rotz:

Well, on that note, Dr. Thomas, thank you so much for joining us today. It's, it's been a real pleasure.

Dr. Stephanie Thomas:

Thank you so much.

Dr. Seth Rotz:

We hope you found today's information valuable. Um, if you'd like to schedule an appointment with Cleveland Clinic Children's, uh, with a pediatric hematologist oncologist or Dr. Thomas, uh, please call 216.444.5437.

Speaker 2:

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