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AYA Program

A cancer diagnosis is devastating for families of adolescents and young adults. Dr. Elizabeth Cull and Dr. Aniket Saha discuss the AYA Cancer Program for adolescents and young adults.
AYA Program
Featured Speaker:
Aniket Saha, MD, MS | Elizabeth Cull, MD
Dr. Aniket Saha is a pediatric hematologist-oncologist in Greenville, South Carolina and is affiliated GHS Greenville Memorial Hospital. He received his medical degree from St. George's University School of Medicine.

Learn more about Aniket Saha, MD, MS 

Dr. Elizabeth Cull, MD is an oncologist in Greenville, South Carolina. She is currently licensed to practice medicine in South Carolina and Illinois. She is affiliated with GHS Greenville Memorial Hospital.

Learn more about Elizabeth Cull, MD

Melanie Cole (Host): Probably one of the worst things a parent can hear is that your child or young adult has cancer. It might possibly be the scariest thing for the whole family. What support services are available and to whom do you turn? My guests in this panel style discussion today are Dr. Aniket Saha. He’s a pediatric hematologist/oncologist with Prisma Health Children's Hospital-Upstate, and Dr. Elizabeth Cull. She’s a medical hematologist/oncologist with Prisma Health Cancer Institute. Dr. Saha, I’d like to start with you. Tell us a little bit about the prevalence and the current status on cancer in the adolescent and young adult population.

Aniket Saha, MD, MS (Guest): Sure. Thank you for having us on this podcast. We are delighted to be here. There are about 70,000 adolescents and young adults who are diagnosed with cancer in the United States every year. This accounts for a small percentage of the entire population of the US who get diagnosed with cancer. But this is an important and very unique population that we come across as oncologists. Over at Prisma Heath Cancer Institute we see between 150 to 200 new adolescents and young adults that are diagnosed with cancer every year. Adolescents and young adults are defined as those patients who are between the ages of 15 and 39 who get diagnosed with cancer.

Host: Dr. Cull, what types of cancer are you seeing in this population?

Elizabeth Cull, MD (Guest): Yeah, so it’s pretty varied. The biggest ones we see are breast cancer, certain leukemias and lymphomas and certain sarcomas which are cancers of the soft tissue. But more and more we are actually seeing cancers that were historically seen in older adults. Things like colon cancer and some pancreas cancer occurring in younger and younger patients. And that may be in some way related to the obesity epidemic in the United States.

Host: Dr. Cull, I’m going to stick with you for a minute. Do you feel that these seem to be genetic, random? You just mentioned that they could be environmentally related in childhood obesity. What do you feel is the etiology or the cause? What are some of the factors that you think are contributing to these cancers?

Dr. Cull: Yeah, that’s a great question. I mean I think the first point is that cancer is not one disease. Every cancer is different and it’s mechanism of action and the – obviously the tissues that it affects, but certainly not a one size fits all explanation. I mean I think in general, most of the time, we tend to think it’s somewhat environment and there may be some underlying genetic predisposition to maybe why these folks are getting cancer at such a young age. The majority of AYA cancers though are not inherited. Some of the more common ones we think about are colon cancer and breast cancer. But still that’s a minority of patients that are getting diagnosed have an inherited or particularly strong family history of cancer. The majority of young adult cancer is completely sporadic. So, we really are learning – continuing to learn about why these cancers are developing at such young ages in certain people.

Host: Dr. Saha, tell us about the AYA program through Prisma Health Cancer Institute.

Dr. Saha: Sure, I’d be glad to. So, one of the things that has become very apparent as I had mentioned before, is that this population is actually a very, very unique population. These patients are not like a three-year-old kid with say leukemia who I would generally see in my office and who has all the support that they need, from their parents and families, or perhaps an elderly person who falls outside this age range. So, these patients tend to have some unique challenges that can sometimes become a problem for them as they are getting their care. So, this can include say an 18-year-old finishing up high school, entering college or a young college student or a young person who is entering the workforce or a person with a young family. So, all of these things can make a difference in terms of how a patient – when a patient seeks medical care or seeks medical attention for a lump or bump that they might feel because they have other things to attend to.

And so, these things can certainly make a difference and also the biology of patients – the biology of the cancers in these patients are also very unique which can make them – which can sometimes make them challenging to treat. Then the other thing that we have seen is that patients in this age group have some challenges with respect to getting fertility counseling because this is kind of when most people would have their kids and things like that or would want to start their families and then also what we have seen is that patients may not be offered clinical trials or may not know about clinical trials that could sometimes be lifesaving for them.

So, all of these things put together, basically put patients in this age group in a disadvantage when they are getting their medical care and may affect their outcome. So, what we have realized and other people around the country have realized is that you really need a special team and a dedicated team to be able to provide the kind of support services and also be able to make sure that they get the best care that they are supposed to get in order to get them to a place where they can move on with their lives.

Because of that, the AYA oncology program was created at Prisma Health.

Host: Dr. Cull, as Dr. Saha was discussing some of the unique set of needs that have to be continually addressed as these kids undergo cancer therapy and follow up care. What are some of the others, may be that he didn’t mention that you notice. I mean he mentioned fertility and we will talk about that in a bit. But there’s dating and sex and social life are tops of their minds, isolation, school. What do you want to tell the listeners about this unique set of needs and how they are dealt with at the AYA program?

Dr. Cull: Yeah, you’re absolutely right. So, what we try and do is take a really individualized approach to each patient. I mean obviously, the AYA age group is wide 15-39. The needs of a 15-year-old are very different than a 39-year-old. So, we really try and take every patient individually and cater to their exact needs. This need for connection is huge and I think we see that across the age groups. I mean oftentimes people are sitting in infusion rooms next to people that are much older than them and it can feel very isolating. So, we’ve over the last two years worked with AYA patients here. We have created an AYA patient council that’s patients who have been through treatment here, family members that have been involved and they help sort of direct some of our social programing and help us just make the program better in general.

We have multiple different support groups. We have a young women’s support group that meets monthly. We try and do a monthly AYA activity, oftentimes a family activity that people can bring their family to. For example, over the summer, we got a box at Ford Field, at the baseball stadium and everyone brought their family and friends and just all got together and didn’t talk about cancer, but just enjoyed people’s sort of fellowship and were able to make some connections with people that had gone through something similar.

So, we really are trying to connect patients. Ultimately, we are working to have an AYA space where we can connect patients while they are getting their infusion treatments. Again, trying to do it in a more natural way. I mean oftentimes people are sitting there for eight hours at a time and being able to talk with people that are your same age and connect with them. People say that that is something that they really are looking for.

Other needs, I mean the financial needs are huge. Financial toxicity is the technical name for it, but oftentimes patients don’t have enough money to pay for their medications, but nobody is necessarily asking that question and so they don’t take their medications. And so, we either try and get them resources that will help pay for medications or there are other resources available locally in Greenville that will help with bill pay or gas pay and so that can at least take off some of the burden and they can allocate funds then towards their medications. So, I think that’s a very unaddressed need, really throughout all of cancer patients, but specifically in the AYAs, we are really trying to address that.

Host: Dr. Cull, staying with you for a second, Dr. Saha mentioned fertility preservation. Tell us about that discussion. What does that look like? Because as you said, this is a very wide range from 15 to 39, 15-year-olds might be interested in fertility preservation options as well as someone in their 20s or early 30s. How is that discussed and tell us about some of the options they might have.

Dr. Cull: Yeah, well unfortunately, it is not often discussed. You would think it would be, but again, especially in the adult world, we are oftentimes not taking care of such young people and so fertility preservation is not always at the forefront of people’s minds. So, unfortunately only about 20% of AYA patients are getting a fertility discussion which obviously is very, very low and needs to improve. So, the times that it does occur, it needs to be occurring before starting chemotherapy or radiation because obviously if you do it after that point, the time to intervene may have passed.

Fortunately, we have a very active reproductive endocrinology and infertility service here that will see patients within 24-hours of a referral. So, a lot of it is just education. We are trying to get out to all of the oncologists that the reproductive folks are available really at a moment’s notice and will see patients at any time, even the weekend. I have had them come out when patients are in the hospital on the weekend and do sperm banking. For women, it can be a little bit more complicated obviously. Because it has to do with their cycle and sometimes it can take a little bit more planning. But again, the message we are trying to convey is that in most cancers, that there is time to wait and be able to try and do this fertility preservation. In most cancers, people at least have a few weeks to get this sorted out. There are a few where treatment has to start immediately, but that’s not really the norm.

Again, AYA patients list the fact that they have lost their fertility or the fact that no one ever had a fertility discussion as one of the biggest regrets and biggest sources of sadness or despair and so we are really trying to work to systemize this process and so that every single patient between 15 and 39 has a documented fertility discussion and gets a referral immediately to the reproductive folks if they desire.

Host: Dr. Saha, speak about some of the providers and the multidisciplinary team that you have at the AYA program and as she mentioned referrals for reproductive endocrinologists or all of these types of providers because there is also psychological issues and anxiety and the whole family. Speak about the multidisciplinary team.

Dr. Saha: Sure. So, the core program consists of five people. So, myself, I’m the pediatric oncologist and Dr. Cull who is the medical oncologist. We have a nurse practitioner, Heather Powers, who maintains a database and makes sure that our referrals are coming through and kind of runs some of our programs with respect to clinical trials and things like that. We have Carrie Susko who is a counselor. She’s a certified counselor and she’s also a social worker and she runs many of the support programs that we have for our patients. And then she works mainly with adult patients, those who are over 18 but she can also support younger patients as well and their caregivers. And then we have Amy Bowers who is a pediatric social worker and she primarily works with our pediatric patients who are between the ages of 15 and 18 and helps provide support for them. So, this is our core group.

But beyond that, as you mentioned, we have a multidisciplinary team that we reach out to in order to provide all the different things that we need. So, fertility with reproductive endocrinology and infertility, the team at Prisma, so we work very closely with them. Another set of providers that we work with is the cancer genetics program over at the CIOS, so they help to see all of our patients as well as whenever we think that it’s appropriate. And then we also have all of the clinical research associates over at the Cancer Institute and the Children’s Hospital who help to basically – who help us enroll patients onto clinical trials and things like that. So, that’s also a huge part of our mission and so, those three I would say are the pillars of what we provide.

And then CIOS, in itself at the Cancer Institute, they provide a lot of the other types of psychosocial support that we may need. So, in addition to Carrie Susko doing counseling, we also have a Cancer Institute chaplain. We have the diet and nutritionists over at CIOS who we send patients to. We have the Moving On rehab program that we send several patients to. So, and I’m sure I have forgotten a couple of them, but these are all the different types of folks that we reach out to on a regular basis in order to provide the kind of services that are needed for these patients. And the other thing I should also say is that we work very closely with the financial counselors throughout the Cancer Institute system to make sure that these patients are getting the appropriate financial counseling that they need because financial toxicity is a big, big issue that we have come across.

Host: Dr. Cull, how are the families involved in support services, siblings and parents? They are probably feeling lost and scared while they watch their loved young one going through this. How are these support services involving the families?

Dr. Cull: Yeah, so, the Center for Integrative Oncology and Survivorship, the CIOS has a multitude of programs that are available for cancer patients and their families, free yoga, free nutrition classes, they do a cooking class where people can come, cook and then eat together. So, that is all free for the patients and their families so, that’s a great source of connection and education. There are several caregiver support groups so, some that meet or specifically to connect caregivers together. But you are right, yes, oftentimes people – it’s difficult to watch a loved one go through that and oftentimes the family is looking for ways they can reach out and help. So, I think definitely working on more programs that can involve I think family members is one of our future goals.

Host: Dr. Saha, do you advise, depending on the cancer type, a genetic test for siblings and other members of the family based on whatever type of cancer they’ve been diagnosed with?

Dr. Saha: Yeah, so that’s always in the back of our minds. It’s usually not an urgent test, but something that we sometimes will initiate the conversation with the patient and whoever they bring along and just start to see. It really will depend on the cancer types. Sometimes, some cancers are literally just a random event, something like Hodgkin’s or something like that. But what we try to do is try to get a sense of what the family history is like, but you really need a cancer geneticist to really tease out the nuances of all the different types of cancers that may have occurred in a patient’s family. And so, based on that, sometimes we will refer a patient over to see cancer genetics. So, it’s not a one size fits all. You really cannot take this approach because that would really be a disservice and would be possibly not the best use of resources. So, you really have to look at the cancer type and then get a sense of the patient’s family history and then see if they would benefit from a cancer genetic counseling. So, we do that fairly often.

Host: Dr. Cull, last word to you. Tell us what you would like the listeners to take away from the AYA program through Prisma Health Cancer Institute, what you would like listeners to know about finding an oncologist and how the families can work together with you both to help their young adults and adolescents through this really, really scary time.

Dr. Cull: Yeah, I mean I think the first thing is just knowing that the program is here. I think pediatric cancer as it should, gets a lot of attention, but I think everyone obviously has – can imagine themselves as a young dad or a young mom with young kids and then getting a cancer diagnosis or going through college and getting a cancer diagnosis. Or starting a new job and getting a cancer diagnosis and just thinking about how challenging that part of your life is in general, and then adding on such a huge life changing event as that.

So, I think just getting the word out that we exist and that you don’t have to go through this alone, although it’s – fortunately AYA cancer is relatively rare. There are plenty of people that unfortunately do have cancer and trying to make those connections and make sure that people understand that they are not alone and that there are people that can support them as they go through it. Not even just obviously other patients, but all the different support programs that we have just detailed.

Host: Thank you so much, both of you for joining us today and sharing your expertise on what’s involved in the AYA program for young adults and adolescents with cancer. Thank you again. You’re listening to Inside Health. I’m Melanie Cole. Thanks so much for tuning in.