Adolescent and young adult cancer: What to know
Fighting cancer is overwhelming for anyone, but having cancer when you’re a teenager or young adult can bring its own unique challenges. Oncologist Elizabeth Cull, MD, discusses these challenges and what can be done to help young people age 15–39 who are on this cancer journey.
Dr. Rania Habib (Host): The American Cancer Society estimates that 5,000 to 6,000 adolescents are diagnosed with cancer in the U.S. each year. Cancer in a teenager or young adult is overwhelming. But the good news is that the five-year survival rate is estimated to be 83 to 90 percent.
Today we will be speaking with Dr. Elizabeth Cull, an oncologist and co-director of the Adolescent and Young Adult Cancer Program, abbreviated AYA, at the Prisma Health Cancer Institute, about cancer in adolescents and young adults. This is Flourish, a podcast brought to you by Prisma Health. I’m your host, Dr. Rania Habib. Welcome, Dr. Cull.
Elizabeth Cull, MD: Thank you for having me.
Host: We’re so excited that you are here. To begin, what age defines the adolescent or young adult group?
Elizabeth Cull, MD: So AYA is defined as patients between the ages of 15 and 39 that have a cancer diagnosis.
Host: How prevalent is cancer in this age group? And are cancer rates increasing in adolescents and young adults?
Elizabeth Cull, MD: So, fortunately, cancer is still relatively rare in adolescents and young adults, but there is still, estimated to be about 90,000 new cancer diagnoses in this age group, per year. As you noted, cancer survival rates have been improving in the group, but additionally, cancer rates have also kind of mildly also increased as well, in this group.
Host: What type of cancer is found most often in this age group?
Elizabeth Cull, MD: So the most common cancers that we see, breast cancer, thyroid cancer, some of the skin cancers like melanoma, leukemias and lymphomas, and then a little bit more rarely, but, some of the brain tumors we can see as well.
Host: Wow, that’s really unique. So once these patients are diagnosed with cancer, what is the survival rate in this unique age group for each of those different types of cancers that you were speaking about?
Elizabeth Cull, MD: Every diagnosis is so different. I mean, in general, patients do pretty well. I think you had quoted survival rates of approximately 85% in all comers. But if we compare adolescent, young adult patients to their pediatric counterparts, I mean, at least historically, they have not done as well compared to the younger cohort.
And this is for a variety of different reasons. Some of it’s the biology of the cancer, just the behavior that they respond differently to our treatments. A lot of it is psychosocial, which I’m sure we’ll talk about. But, this is a pretty unique group of patients.
They’re, you know, in school, they’re having jobs, they’re starting families. And, getting a cancer diagnosis at any time in your life is obviously incredibly disruptive, but particularly in this age group, it can be even more difficult. Financial concerns, trying to get to appointments on time, having the psychosocial support to get through a cancer diagnosis.
All of these things kind of factor in, ultimately, into the outcome for the patient. So, that’s why these types of AYA programs exist at Prisma Health and throughout the country to try and take that multifaceted approach to the patients’ care and make sure we’re supporting them in all aspects of their health and, addressing these psychosocial concerns to try and improve outcomes as much as possible.
Host: That is wonderful. And how long at Prisma Health has AYA been there?
Elizabeth Cull, MD: So we started back in 2016 and this was a collaborative effort between myself and then one of our pediatric oncologists, Dr. Aniket Saha. And this is one of the really important things in developing an AYA program is that you really need buy-in, both from the adult and pediatric side. Many times it’s just sort of a pediatric led initiative. And, you know, I talked about the ages, I mean, 15 to 39. Most of these patients are actually in the adult setting. So having buy-in from both groups is really important.
Host: That’s wonderful that they’re both invested. So compared to adults or children, why do adolescents get cancer? Do we know like the main causes?
Elizabeth Cull, MD: Yeah, that’s a great question and not a simple answer. I mean, I think one important point to drive home is that really most AYA cancers are not inherited. So they’re not from, you know, an underlying inherited genetic syndrome, that really is only less than about 10% of cases. We can see that sometimes more in breast and ovarian cancers and some colorectal cancers.
But in general, most of these cancers are sporadic and we don’t know why one person gets it and one person doesn’t. It is likely a multifactorial issue between the patient’s genetics, environmental factors, and then I’m sure many things that we don’t yet understand.
Host: Can cancer in this unique age group be prevented at all?
Elizabeth Cull, MD: I think one thing to point out is that cancer is not one disease. I mean, it’s many, many different diseases. And, you know, they all have kind of their unique risk factors. I mean, I always tell patients, it’s not your fault. There’s nothing you did or didn’t do, to get this. I mean, in general, we encourage people to take control of the things that they can. So, having a healthy lifestyle, getting the recommended amount of exercise a week. Melanoma, I mentioned, was more common in this age group and, you know, applying sunscreen liberally, avoiding the tanning bed, wearing your hat.
I mean, those are things you can do to help prevent cancer. Cervical cancer screening, obviously mammograms if you’re at a certain age. Those are things that we can do to help catch cancers early. The HPV vaccine is recommended it for early teenagers and that has shown to decrease risk of cervical cancer and some other cancers in the future as well.
So these are things that we can do to minimize these things as much as possible. Understanding that obviously we can’t ever take the risk completely to zero.
Host: Absolutely. Thank you for sharing those. Now, what are some possible warning signs and symptoms of cancer in teenagers and young adults that they should be looking out for?
Elizabeth Cull, MD: So I think one of the key points about AYA cancer is that it’s often diagnosed late in its course. And the reason for that is, these are not common situations. And so oftentimes symptoms of cancer are attributed to other more benign causes. That’s one issue.
And then secondly, oftentimes patients, especially in if they’re young adults, in their twenties and thirties, don’t always have a primary care doctor. And they’ve kind of grown out of their pediatric clinics. And so this can all lead to delays in diagnosis.
Host: So, compared to adults or children, do they have similar signs of like, fatigue and you know, what we call like the type A symptoms? And if you could describe that a little bit.
Elizabeth Cull, MD: So cancer can present sometimes very non specifically, you know, fatigue, fevers you can’t explain, weight loss, night sweats. And then there can be more specific symptoms. So, I always encourage patients to be familiar with kind of what their norm is, be familiar with their body and if they notice any new mass or lump of the breast for example, that would be an indication to call.
Another thing I think that is more and more recognized and has become more common, unfortunately, is colon cancer in young adults. And so, change in bowel movements, bloody stool, things that sometimes get attributed to more benign causes, recognizing that that could be a sign of something potentially more serious. And talking to your doctor early.
Host: That’s wonderful advice. I really appreciate you sharing that. So how is cancer treatment different for this adolescent young adult age group?
Elizabeth Cull, MD: I will say in general, the therapy is probably more intensive just because we know that patients can tolerate a more intensive regimen. We try, like in the leukemic patients to use more pediatric protocols, which tend to be more intense compared to adult protocols, ‘cause those tend to have better outcomes.
But in general, I mean, the treatments are pretty standardized. There’s not a treatment for, say a 30-year-old versus a 60-year-old if they have essentially the same cancer. I mean, it would be depending on the disease, chemotherapy or surgery or radiation or any combination of those.
Host: So what are some unique challenges that adolescents and young adults with cancer face that might be more unique than a child or a full adult?
Elizabeth Cull, MD: There’s so many. I touched on a few before, but I think the financial toxicity of therapy is huge. Many patients don’t have insurance. There’s been some improvement ‘cause people can be on their parents’ insurance to the age of 26. And that’s helped. But many patients come in with no insurance.
They’re trying to work, and getting cancer care is a full-time job essentially. And so trying to balance those things. I think one another really big one unique to this population is fertility concerns. So, at least historically, if you look at different reports, only like a quarter of patients are having a documented discussion about how treatment will affect their fertility.
So people are going into treatment not even sometimes knowing that this could affect their ability to have children in the future. And so that’s really huge. So we definitely, want at least to bring it up to everybody. And then really work closely with our reproductive endocrinology colleagues to talk to patients either about sperm banking, if they’re a male or if they’re a female, they have a variety of other different options that we can usually get done fairly quickly. I think there’s some concern that, oh, can you wait if you have a new cancer diagnosis? And sometimes you can’t, but a lot of the times you can wait a couple of weeks to get the process complete. I think those are probably the biggest problems that we see.
Host: Now, what makes AYA at the Prisma Health Cancer Institute unique compared to other programs?
Elizabeth Cull, MD: I think the fact that we have a program at all is excellent. And we’re very lucky here that through the Center for Integrative Oncology and Survivorship, the CIOS, they have so many great programs. So we work with the genetics department there to get appropriate patients genetic screening.
They have so many different classes and other support staff that can help, the colleges. We employ them very frequently to help support our patients. And the other big thing that we do is we try and do events. Like I said, cancer in this population is rare and people sometimes feel like they’re the only person in their twenties or thirties that has cancer.
And so we really try and about every other month, to go to a baseball game or have a craft event with families so people can connect with other young adults to realize that they’re not alone.
Host: That is sounds great. So it’s really sounds like it’s a multi-disciplinary approach where you have all different elements, all in one space for the teen to get and young adult to get the optimized care, so that is wonderful.
What advice would you give to a parent caring for a teen or young adult diagnosed with cancer, ‘cause obviously they’re not often by themselves. So what advice would you give that parent?
Elizabeth Cull, MD: Kind of depends. If they’re truly an adult, I think they’re obviously there to support their child as much as possible, and I think they should come to every visit. I mean, I think for any patient, having that second set of ears is really, really, important. So I would just encourage people to ask a lot of questions. Write down your questions so you’re prepared for when the doctor comes in and then, help your child out in any other way possible so that if they have kids, do they need you to watch their kids while they’re getting cancer treatment? Is there a way you can help out financially? Can you offer transportation support things like that.
Host: That is wonderful. And my final question is, for those patients that you’re advising them about fertility options, when in the treatment are you having them pursue that additional treatment?
Elizabeth Cull, MD: As early as possible. So for a new consult that we see that referral is placed immediately and the reproductive endocrinologists will see these patients within 24 hours, even if it’s on the weekend, or if they’re inpatient. It’s just that vitally important to at least get the process started.
Host: Well, thank you so much for joining us today and for sharing your expertise, Dr. Cull.
For more information and to listen to additional episodes of Flourish, please visit PrismaHealth.org/Flourish. This has been Flourish, a podcast brought to you by Prisma Health. I’m Dr. Rania Habib. Stay well.Read More
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