Childhood Cancer Survivorship

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research in clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepard, a medical oncologist here at Cleveland Clinic overseeing our Taussig Phase I and Sarcoma Programs. Today, I'm happy to be joined by Dr. Seth Rotz, Director of the Childhood Cancer Survivorship Program at Cleveland Clinic Children's. He's here today to talk to us about childhood cancer survivorship. So welcome, Seth.

Seth Rotz, MD: It's great to be here, I appreciate it.

Dale Shepard, MD, PhD: So maybe to start out give us a little idea, what's your role here at Cleveland Clinic Children's?

Seth Rotz, MD: Yeah, so I have two main roles. The first thing is I treat children with blood cancers, leukemias and lymphomas, and do bone marrow transplant. And then the other hat I wear is I run our Survivorship Program. So taking care of folks that are now long-term cancer survivors and trying to think globally about their long-term health and keeping them healthy now that they've overcome cancer.

Dale Shepard, MD, PhD: Excellent. So, well, that's exactly what we're going to talk about today is about childhood cancer survivorship and the Childhood Cancer Survivorship Program. So let's start really basic. How do we define survivorship? How do we define a survivor of a childhood cancer?

Seth Rotz, MD: There's all sorts of different ways to define it. Speaking for our Clinic, in general, we define somebody who's more than five years from finishing treatment as a long-term childhood cancer survivor though realistically, when is somebody cured with cancer depends on what type of cancer, depends on who you ask, but in general, patients come to see us about five years after finishing treatment or when their primary oncologist say that the risk of the cancer coming back is extremely low.

Dale Shepard, MD, PhD: All right. Perfect. Give us an idea, how many patients are we talking when you think about childhood cancers and survivors? I got to say, as an adult oncologist, I'm a little jealous because it seems like you guys do a better job having survivors. I mean just a lot of factors for that. How many patients are we talking?

Seth Rotz, MD: So in the US each year, there's about 15,000 children diagnosed with cancer and right now there's about 80 to 85% of them will survive five years or longer. So, roughly 80% of that 15,000 kids are going to be cured. So doing the math, I don't have a napkin in front of me, but that makes about 12,000 new childhood cancer survivors a year and a couple of papers have estimated that right now there's probably about 500,000 childhood cancer survivors in the US. We see a couple hundred of those in our Clinic.

Dale Shepard, MD, PhD: So it's a pretty common phenomenon and really something we need to take a serious look at.

Seth Rotz, MD: Yeah, I think, if you think about it, 500,000 Americans, it's a big number and a small number at the same time. It's one in 700 or so folks, childhood cancer is not common, but if you walk down the street, a lot of people know somebody or know somebody who knows somebody who had childhood cancer. So it's not at all that uncommon.

Dale Shepard, MD, PhD: So let's just jump in, tell us about the program. What do we have as a program and kind of how did it get started and where is it currently?

Seth Rotz, MD: You know, our program sees a couple of hundred now and most of the patients are young adults that are childhood cancer survivors. We're housed in Pediatric Institute, but we see folks of all ages. So anybody who is treated in childhood or young adulthood for a cancer, we will see. We'll see people in or twenties, thirties, forties, fifties. I haven't seen anybody in their sixties yet, but I wouldn't be opposed to it if we had somebody who wanted to see us. In general, what we're doing is trying to think, kind of strategically about what types of treatment people got for their cancer and what are the long-term health implications. So we take a look at somebody's treatment and go over that with them and discuss all the, potential risks for long term, late effects of complications of chemotherapy and radiation and so forth.

And then we have partners throughout the Cleveland Clinic Institute as a whole. So if somebody received a chemotherapy that may affect their heart function, we have a Cardiologist who's a point person on the adult side and the peed side. So depending on how old they are, we have somebody who's got some familiarity and expertise in dealing with complications of chemotherapy and then the same goes across multiple other subspecialties. So we have a group of young adults who maybe got radiation to their belly as part of treatment. And those folks are at risk for colon cancer at an earlier age. So we have, folks in Gastroenterology who are well versed in people that are high risk for colon cancer and can help out with that kind of stuff. I guess the other thing that I would add to that is, one of the things we've spent more time focusing on in the last year to the psychosocial impacts of cancer survivorship.

So, our focus in cancer survivorship has been to a great deal on the medical effects of having received chemotherapy and radiation. And I think, in the last several years, there's just been a lot more attention to what are the long term psychological impacts? What are the financial impacts of having had cancer? Does this impact whether a teenager ends up applying to college or not? Does it put somebody in a position where they can't change jobs because they're worried about health insurance coverage and so forth. And then we have so many people and parents too that have, some degree of post-traumatic stress from their treatment and trying to identify different mental health issues that can go along with this and get people plugged in with the resources they need is also a very important part of what we do.

Dale Shepard, MD, PhD: And so I guess that was what I was going to ask is, particularly with the younger patients, really the parents, there's a big role there and new fear of recurrence and financial impacts and things and so is the program sort of designed to help both the patients and their caregivers or parents?

Seth Rotz, MD: Yeah. Both of those things are important. And again the age range varies. So when we are seeing people that are five years out from treatment, the youngest people we see are six years old or something along those lines, but we do try to address a lot of those things and identify resources for patients and families as well. And in fact, post-traumatic stress among caregivers is just as high as patients. And you can imagine if you have a very young child who's treated for cancer, they may not remember their cancer experience at all as an adult, but you better believe that their parents are going to have pretty strong memories of that.

Dale Shepard, MD, PhD: So, as I recall, you have Internal Medicine Training as well as Pediatric Training and so you did mention seeing 20 or 30 or 50, even your 80 year olds. Well, if you have a long enough program, you'll see the 80 year olds right?

Seth Rotz, MD: Yeah, yeah by the time I retire.

Dale Shepard, MD, PhD: Yeah, so that maybe a little more unique than some that might be thinking about doing these survivorship programs. Tell me about handoffs in a survivorship setting, because I know that with some other diseases that sort of handoff from a pediatric setting to an adult setting can be a little difficult.

Seth Rotz, MD: Yeah, that's like the million dollar question in survivorship is how do you run a survivorship program? And how do you coordinate those transitions? There was a paper a couple of years ago that surveyed a bunch of internists. So, adult primary care physicians asking about their experience taking care of childhood cancer survivors and most of them in the last five years had taken care of either none or a small handful of patients. And generally didn't feel particularly comfortable. So, as you can imagine for somebody doing primary care, taking care of a childhood cancer survivor isn't their bread and butter. So getting these transitions right and helping primary care providers understand what are the risks to patients are really important. Some of that can be done with the treatment summary, but at the same time our recommendations for treatment are changing as we do more research and some of that can be done by empowering patients.

So a lot of times when you have somebody that was treated at a young age, they don't even know that what they got for chemotherapy. So making sure that, we're spending time educating the patients before they transition into the world of adult medicine so that they understand in general what other risks and what they have is important. Our program's a little bit unique, like you said, I trained in Internal Medicine and Pediatrics. So I did a Med-Peds Residency. So folks aren't familiar, Internal Medicine Residency is usually three years and so is a Eds Residency. You can do both in four years, which is what I did and so I'm a board certified internist, although that's not generally part of my day job, but because of that I'm comfortable taking care of folks of all ages. So, to me, for our Clinic there is no aging out. So those transitions aren't something that we have to worry about, but I think we're in the minority because there's only so many MedPeds folks out there.

Dale Shepard, MD, PhD: What are the most common things that we need to think about in terms of risks? So we've talked about risks and we talked about the psychosocial parts but what are the things that are kind of the top players in terms of things that patients may experience later in life as a result of their therapies?

Seth Rotz, MD: I guess there are two questions; what's important to us as doctors and what's important to us as patients? So I think the biggest questions that I get from patients when somebody transitions to see me is, Hey doctor, are you sure this cancer is not going to come back? And by the way if I'm interested in having kids is this something I am going to pass on to my kids? Are they going to be at risk? And oh can I have kids? I got chemotherapy. What does that all mean? So those tend to be the biggest questions we get when we meet a new survivor related to risk of relapse, risk of infertility and the genetic counseling aspect of things.

From the fertility side of things, we can have general conversations with folks in terms of what chemo they received, what is their risk for infertility or subfertility and we also have doctors here at Cleveland Clinic in the Women's Health Institute and in Urology that are well versed in taking care of folks with subfertility. So that is oftentimes the most frequent questions we'll get from people upfront. And then I think from a medical standpoint, the two biggest things that I'm thinking about when I see most survivors are risk for secondary cancers and risk for cardiovascular disease.

In particular with folks that have received radiation, there are risks of specific cancers really that are focused on where did you get radiation? So if you're a woman in got radiation to your chest, breast cancer is going to be a risk there. If you had radiation to your abdomen for perhaps a tumor in your belly as a young child, an increased risk of colon cancer is there and then getting folks plugged into the right resources so that they can get appropriate screening. And then for many different types of cancer, cardiovascular disease is a big thing. So with different types of chemotherapy, you can have issues with the pumping function of the heart, cardiomyopathy with radiation, you can have valve diseases or issues with premature vascular disease and then across a lot of different patient groups there's significantly increased risk of just having things like metabolic syndrome, diabetes, elevated cholesterol. So a lot of that stuff that we preach to everybody in terms of healthy living and exercise is part of keeping childhood cancer survivors healthy as well.

Dale Shepard, MD, PhD: You mentioned fertility as one of the first things. I'm going to give you a minute or two to throw in a plug for people to pay attention to it. Do you think we're doing a good enough job sort of on the front end, thinking about fertility preservation as we start treatments. Oftentimes, it sounds like you're getting people coming in and saying, Hey, I went through chemo, what's my risk? And can I have kids? Are we doing enough on the front end to ensure that's a possibility?

Seth Rotz, MD: Well, I guess on the positive side, thinking about fertility is we're doing a heck of a lot better of a job than we were a decade or two ago, but I don't think we're anywhere near to what should be the standard of care, which is that anybody with childbearing potential should have a conversation before starting treatment and should be made aware of potential options before starting treatment. I mean that's the standard and what we're shooting for and what we should not shoot for is an oncology community. I think we're a lot closer to that than we were in the past as we realize many more people are surviving that this is important to survivors, but I think nationally and internationally we're not where we need to be.

We have a fertility navigator in our pediatric group here who's wonderful. So we do aim to meet with every new family and discuss fertility risk of the treatment. They're going to get potentially offer fertility preservation techniques to those folks, depending on what type of cancer they have and what their risk is. So survivorship can start a diagnosis in that respect because although chemotherapy might make somebody sterile, there are options to do fertility preservation techniques often, which can preserve fertility. That's one part of what we do from a fertility preservation standpoint. The other part is a conversation after treatment. People may have had this conversation before when they were treated 10 years ago or five years ago, they may not have. And then we're trying to find out what is people's fertility potential right now. There's a lot of childhood cancer survivors who have normal fertility potential. There are some childhood cancer survivors who have very poor fertility potential. And then there's a group in the middle that have issues with subfertility and getting those plugged into experts who can help make childbearing a reality is really important.

In particular for women, women may have a reasonable degree of fertility soon after treatment, maybe in their teenage years, but they may be at risk of going through menopause at an earlier age. So letting them know that there may be this window for fertility, but it's a smaller window than somebody who didn't get cancer treatment is also really an important thing to do.

Dale Shepard, MD, PhD: We've talked about fertility, we think about other factors like the cardiovascular risk and things, anything that you find encouraging that's going on now in terms of trying to minimize risk as patients perhaps are getting treatment to maybe make that survivorship better in the future.

Seth Rotz, MD: Yeah. Cardiovascularly, I think the biggest thing in the last couple of years is the increased use of a drug called Dexrazoxane. I don't know how much you guys use it on the adult side, but it's a drug that can help protect the heart from some of the effects of a type of chemotherapy called anthracyclines. What we've seen in the pediatric literature is giving these drugs can help preserve the cardiac pumping function without compromising the ability of the chemo to treat the cancer. I think realizing that, that drug seems to be beneficial long-term and also not increase the risk for relapse or cause other complications has been really helpful. And with that in pediatric oncology, we're using a lot more of that.

The other thing that I think is also really helpful is the way things have changed in Radiation Oncology. For example, if you have somebody with a tumor in their chest. There's a whole lot of different ways of deploying radiation to that tumor to make it go away and whenever you use radiation, part of it is hitting the tumor and part of it is hitting healthy tissues in the chest, that's oftentimes the heart. So radiation oncologists have also gotten more thoughtful and the technology has gotten better so that they can really carve out their treatment plans to try to minimize toxicity as much as possible to important things like the heart.

Dale Shepard, MD, PhD: When you think about a patient you may treated for a leukemia, they sort of stand your care, they kind of transition into a survivorship program. That's certainly one path. Do you have patients that may have been treated other places that'll seek you out simply for the survivorship portion?

Seth Rotz, MD: Yeah, we do. I think the majority of the patients we see were treated at Cleveland Clinic and kind of graduate upwards but we certainly see our fair of share of people that might have been treated somewhere else. And they maybe in their twenties and moved here for a job or came here for college or started a family in Cleveland. Interestingly enough, over the last couple years, we've really established partnerships with a lot of different disciplines, particularly on the adult side for treating long-term complications. So if you have a kidney issue, there's a Nephrologist in particular that will refer to and interestingly enough we've gotten a lot of referrals coming back the other way. So somebody who's got kidney disease is their main manifestation of problems from childhood cancer, hasn't seen any oncologist in years, but they are seeing a new kidney doctor and they say, oh yeah, you should go talk to these folks, even though they're in the Children's Hospital, even whatever age you are it's worth having a conversation with them.

The other thing that's been helpful for us to reach more patients is virtual visits. So I guess that is one silver lining that's come out of the COVID-19 pandemic is that we're able to do these virtual visits a lot more frequently and effectively. So we can see people that are out of town more easily. So sometimes people find our name that way, but also it helps us stay in touch with folks we may have treated here who have moved on. So maybe somebody was treated for leukemia at 10 years old here at Cleveland Clinic and has graduated high school and went off to college and now maybe they live somewhere else, but they haven't been able to find somebody who's got some expertise in survivorship, being able to do virtual visits in touch base with those folks has gone a long way to helping us reach more people.

Dale Shepard, MD, PhD: What are the biggest gaps? What do you think is going to overcome the problems with this being a more widespread service for children who have had cancers?

Seth Rotz, MD: Yeah, I think really that transitions of care is the biggest thing as you mentioned before. As a whole, there's only so many Med-Peds folks out there. So depending on where you are treated, especially if you're at Children's Hospital, most of those folks are eventually going to age out and trying to effectively transition people is important. There's been a lot of work done in looking at survivorship care plans. How do you optimally create some type of document that can go with somebody so the manual of how to take care of them can go with them? But I think that only goes so far. I think specialized programs that's my bias, I think are important because again, most people in the primary care world, it's not their bread and butter and knowing what task goes with what chemotherapy received is not something that you're frequently thinking about.

The Children's Oncology Group publishes survivorship guidelines every five years. Those will come out again in 2023 and in the most recent update which was done in 2018, they really focused on simplifying the guidelines so that more folks in the community would be comfortable with it and I think that goes a long way, is not trying to make survivorship care, super, super specialized, just make it straightforward so people can deal with it. I think those are big issues in childhood cancer survivors. And I think just the continued thoughtfulness about this, because I think as a cancer community, we're slowly getting better at treating all different types of cancers whereas before we were just trying to get the cancer to go away, now we're trying to get the cancer to go away and have people thrive the rest of their life. So I think just increased thoughtfulness about this and thoughtfulness about the ways that we design clinical trials to reduce toxicity and so forth are important going forward.

Dale Shepard, MD, PhD: And then I guess lastly, on a high note, what do you find most exciting in the area right now?

Seth Rotz, MD: I love this part of my job because you get to see the success stories and you get to see people thriving in living their lives. And I think that's a wonderful thing to be a part of, to witness. From a medical or science standpoint, I think one of the things that we're learning about for survivorship is so much of the research that's historically gone on is kind of, I guess, what you'd call epidemiologic research, looking at an exposure and then looking at the long-term effect and being able to identify those things. And I think we've gotten really good at knowing what treatments cause what issues. I think now we're starting to better understand why those things happen. So looking on a cellular molecular level is why does certain chemos cause problem, why the radiation causes a specific problem? Because if we can understand those specific issues that allows us to test new therapies, to try to prevent or reverse those things, as opposed to just identifying them.

Dale Shepard, MD, PhD: Excellent. Well, Seth, you've given us some great insight today and I appreciate you being with us.

Seth Rotz, MD: Yeah, it's been great. Thank you

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