Navigating Lymphoma and Survivorship in Adolescents and Young Adults

Dr. Kara Kelly highlights diagnostic delays, treatment gaps and late effects faced by adolescents and young adults with lymphoma.

Adolescent and young adult (AYA) patients with cancer, specifically lymphoma — a type of blood cancer — face many unique challenges following their cancer diagnosis, according to Dr. Kara Kelly.

These challenges can include a delay in diagnosis and transitional gaps between pediatric and adult oncology treatment. In turn, this may require a more age-specific treatment approach, and personalized long-term survivorship planning to address the late effects that treatment can cause. For example, some therapeutic agents are associated with an impact on fertility.

“I think one of the biggest challenges for patients who develop lymphoma in that age group is that there are often delays in diagnosis. AYA’s tend to be healthy in general, and they are also in a transitional period in their lives. Many of them don’t have a primary care doctor or health insurance,” Kelly emphasized in an interview with CURE.

Kelly sat down for the interview to discuss the importance of recognizing cancer in AYA patients, how their diagnosis differs from those in younger and older patients, and the long-term health concerns this group should be aware of to best prepare for survivorship.

Kelly works in Pediatric Oncology, is the chair of the Department of Pediatric Oncology, as well as the Waldemar J. Kaminski Endowed Chair of Pediatrics, at the Roswell Park Comprehensive Cancer Center, located in Buffalo, New York.

CURE: What makes lymphoma in AYA’s different from lymphoma in children or older adults? How does this impact diagnosis and treatments?

Kelly: Lymphomas are among the most common types of cancers observed in the adolescent and young adult age group, particularly in the younger end of that spectrum. We define AYAs as individuals aged 15 to 39, and Hodgkin lymphoma, for example, is the most common cancer observed in patients in their teenage years as well as in their 20s.

Regarding non-Hodgkin lymphoma, there are unique differences in the types of lymphomas that occur in this age group compared to younger children and older adults. In non-Hodgkin lymphomas, we tend to see more diverse types, for example, high-grade lymphomas like diffuse large B-cell lymphoma, which has a very different prognosis and characteristics compared to older adults.

Other types of lymphoma, like anaplastic large cell lymphoma, tend to occur more frequently in the teenage and young adult years. So, there are differences in the presentation as well as the different subtypes that occur within this population, which is very important for physicians to be aware of, especially in terms of how they evaluate these patients and how they manage their care.

What are some of the most common challenges faced by ay patients with lymphoma? How do the lymphoma Research Foundation's initiatives help address these challenges?

I think one of the biggest challenges for patients who develop lymphoma in that age group is that there are often delays in diagnosis. AYA’s tend to be healthy in general, and they are also in a transitional period in their lives, moving out from their parents' homes to study or take their first jobs. Many of them don't have a primary care doctor or health insurance.

Unfortunately, this leads to a lot of misdiagnosis or delays in diagnosis of lymphoma because either physicians are not considering lymphoma as the cause of their symptoms, or patients may not have health insurance or know where to seek help and may postpone seeing a doctor until the lymphoma is in a much more advanced stage. This delay or misdiagnosis is a major concern in this population. The second challenge is that these patients are somewhat in the gray zone between pediatric and adult oncology.

For some subtypes of lymphoma, there have historically been quite different approaches to managing these patients. My area of expertise is Hodgkin lymphoma, and one of the things that has really struck me is that an 18-year-old patient who comes in with Hodgkin lymphoma might receive a totally different treatment recommendation compared to if they were seen by one of my adult oncology colleagues down the hall.

There has been a real need for us to come together — the pediatric and adult oncology disciplines — and try to harmonize our processes. Fortunately, this is one area where we are really beginning to see the results of these collaborative efforts. Now, we don't have a separate pediatric or adult recommendation but a recommendation that is truly the best for adolescents and young adults with lymphoma.

What long-term health concerns should AYA survivors of lymphoma be aware of so they can best prepare for survivorship?

Fortunately, most of the lymphoma types we see in the adolescent and young adult age group are very treatable and associated with high survival rates and good response to therapy. These patients are likely to be cured, and being fairly young, they have a very long life ahead of them. However, with this, we unfortunately do see the emergence of late toxicities from therapy, especially from the more conventional treatments that have been part of our therapeutic options.

For example, in Hodgkin lymphoma, up until recently, the standard had been to combine chemotherapy with radiation treatment. With this approach, our long-term survivors can experience higher rates of developing second cancers, like breast cancer or thyroid cancer, because of the areas where the radiation fields were directed. High cumulative doses of chemotherapy, particularly doxorubicin, can increase the risk of long-term cardiovascular complications like the early development of congestive heart failure or a higher risk of strokes and valve problems.

Additionally, some chemotherapy agents are associated with an impact on fertility. Our female survivors are at higher risk for developing premature menopause, while male survivors are at risk for not being able to produce sperm anymore. Therefore, it is very important that our survivors have an oncofertility consultation at the time of diagnosis, so they know what their options are, especially regarding the cryopreservation of eggs or sperm, to give them more options after their therapy is complete. I think one of the most important things, too, is that these adolescent and young adult lymphoma survivors should stay connected with a survivorship program or at least with a good primary care doctor familiar with the screening guidelines important for staying ahead of any of these complications.

All too often, we see patients get lost to follow-up and then start having either heart issues or breast cancer or thyroid cancer. A lot of times, physicians are not connecting the dots and realizing that these complications were related to the prior treatment for lymphoma. So, ensuring you have a good care team to follow those recommendations is really critical.

Transcript has been edited for clarity and conciseness.

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