Among the specialists who treat them, adolescents and young adults — commonly referred to as AYAs — who are diagnosed with cancer are a unique patient population, and for more than a few reasons. Defined as people aged 15 to 39 years, AYAs are not only unique in terms of the differences in the biology of the cancers they are diagnosed with,1 but in their needs, expectations, treatment considerations, and psychosocial challenges.
“There is a great lack of knowledge in terms of the needs of this patient population, but there has been huge growth in this space,” said John C. Molina, MD, MEd, of Cleveland Clinic, a hematologist who treats adult and pediatric patients with a focus on AYAs. “There is a movement in AYA, in recognition of the work of Archie Bleyer, MD, and others, to focus on these patients and develop programs to train providers on their needs.”
Although AYAs will likely account for less than 5% of all cancer diagnoses in 2023,2 data have indicated that cancer incidence may be increasing among this group.3 Certain hematologic malignancies are among the most common types of cancers diagnosed in AYAs.4
ASH Clinical News recently spoke with providers who treat the AYA patient population about who these patients are, what the reality of a blood cancer diagnosis is for them, and ways physicians can provide resources and support.
Considering the Treatment Space
One of the root causes behind the lack of knowledge about cancer in AYAs is the historical design of the health care system that separates pediatric and adult care, as well as the separation of training programs for the physicians responsible for treating them.
“At Cleveland Clinic, I ‘live’ in the adult leukemia department, but I work closely with my pediatric colleagues looking at how to approach this patient population no matter where they are being treated,” Dr. Molina said.
Something as important as where an AYA patient is treated can have a large impact on their care, Dr. Molina said. Pediatric cancer programs can care for patients up to 25 years or older, but a 23-year-old college graduate or a newly married 25-year-old has different needs than a 4-year-old patient who might be more interested in visiting clowns or having cartoon characters on the wall. Similarly, a 20-year-old in an adult cancer program may not have much in common with the other 60- or 70-year-olds being treated for leukemia.
“The physical space is an important thing, and its importance is something we talk about a lot here,” Dr. Molina said. “There are some places in the country that have created AYA clinics that include a physical space for these patients and people who understand their needs.”
Dr. Molina said that recently there has been recognition and growth in the space, including offering combined pediatric and adult training and teaching providers to recognize the needs of AYAs; however, this increased recognition may not always translate to implementation of AYA-focused programs.
One recent qualitative study looking at practical guidance for implementing specialized AYA care identified several barriers, including difficulty collaborating between pediatric and adult oncologists and the cost of setting up these programs,5 which must address the multitude of issues faced by AYAs after a cancer diagnosis.
Bringing Up Fertility and Sexual Health
One of the first and most important issues that Leidy Isenalumhe, MD, MS, a pediatric and adult hematologist/oncologist at Moffitt Cancer Center in Tampa, Florida, addresses with her AYA patients is fertility.
“This is an important conversation, and I approach it very early on,” Dr. Isenalumhe said.
The range of therapies used to treat cancer can have subsequent effects on fertility. Surveys of male and female AYAs show that the ability to have children is often among their top life goals, and many have concerns about future fertility.6 Other patients, though, may not even be aware that cancer treatments can cause infertility.
“There is always the issue of how acute their illness is and whether we will have enough time to get through fertility preservation,” Dr. Isenalumhe said. “This process is often faster for males, but for females, we do not always have three to four weeks to wait for their next cycle for egg retrieval.”
AYAs who are diagnosed with cancer have a few options for fertility preservation, including egg or embryo freezing, sperm banking, and ovarian tissue freezing. Certain blood cancers, like Hodgkin lymphoma, have more wiggle room for fertility preservation, Dr. Isenalumhe said. Others, like acute leukemias, may not.
Additionally, some hematologic malignancies have unique considerations when it comes to fertility. For example, in leukemia there is some worry that the disease can infiltrate the ovaries, noted Julie Anna Wolfson, MD, MSHS, associate professor of pediatric hematology/oncology and director of the AYA Oncology and Oncofertility Program at the University of Alabama at Birmingham. In these situations, the conversation about fertility can take place at diagnosis, but harvesting ovarian tissue may need to wait until after the patient is in remission but before they undergo transplant, when indicated.
“A lot of patients dealing with the trauma of a cancer diagnosis just want to be cured and don’t want to talk about fertility preservation,” Dr. Isenalumhe said. “If that’s the case, I will keep initiating the conversation until they are ready to have it.”
Early initiation of fertility conversations is highly recommended, as is the use of age-appropriate written and online educational resources. If a change in the treatment plan alters the risk of infertility, a conversation about fertility preservation should be re-initiated.7
Hand-in-hand with a conversation about fertility is a conversation about sexual health, Dr. Isenalumhe said. For patients who are still adolescents, or young adults who come in with their parents, this conversation may have to occur when their parents aren’t present.
“I ask, ‘Are you having intercourse? Let’s talk about it,’” Dr. Isenalumhe said. “Among other things, I discuss that two forms of contraceptive should be used: a condom and birth control.”
She also talks with patients about possible changes in how they feel about themselves. Patients may not feel as attractive or empowered as before, and how they feel about themselves can affect their personal relationships.
On the Outside Looking In
“AYAs are at a unique point in their development in terms of social, emotional, and cognitive development, and that poses unique challenges for them,” Dr. Wolfson said. “These patients may have friends going to high school or college, may watch friends go to parties on the weekends or start new jobs, and these patients are no longer part of that social structure.”
This is often something that patients feel acutely. Dr. Isenalumhe likened it to being held hostage while life moves on without them.
“It is important to remember that during their treatment, patients are undergoing physical changes, hair loss, paleness, weight loss. They don’t feel as attractive or want to go to a restaurant or a club,” Dr. Isenalumhe said. “That decreases their social circle. In many cases, because of social media, they can see their peers out having what looks like an amazing time, and that can leave them feeling left behind.”
The phrase “you know who your friends are” is often discussed, but Dr. Isenalumhe said it is important to remember that the friends of an 18- or a 21-year-old are also growing and changing and likely don’t know how to deal with mortality or difficult situations either.
Ursula Sansom-Daly, MClinPsych, PhD, director of the Behavioural Sciences Unit in the Kids Cancer Centre at Sydney Children’s Hospital in Australia, said she often works with young people to figure out how to talk to their friends about what they are going through and to express how they feel.
“When people are first diagnosed, everyone is there and crowds around a bit, but what often happens is that with time, people fall away,” Dr. Sansom-Daly said.
This feeling of social isolation can increase if patients are forced to stop attending school or lose employment.
Dr. Isenalumhe said her program works hard to keep as many patients as possible in school. She shared a story of one patient who told her he was going to have to drop a college course because his scheduled chemotherapy would force him to miss an important test.
“I said, ‘No! We’ll move your chemotherapy to Saturday,’” she recalled. “He ended up graduating with honors and has a great job today.”
Keeping AYA patients in school may require greater involvement from health care providers, including adjusting treatment schedules or writing letters to teachers to explain if a patient needs special testing time.
For young adults, the same type of efforts should be employed when necessary to keep their lives as normal as possible, Dr. Isenalumhe said. She had a patient who relapsed shortly before he was supposed to travel out of the country to get married.
“I told him that we would make it happen,” she said. “We figured out a way to get him to that wedding healthy.”
However, these efforts also have to include honest conversations about what is realistic for each patient, Dr. Molina said.
“A patient diagnosed with acute leukemia will have to spend at least 30 days in the hospital and will likely have to step away from school for several months,” Dr. Molina said. “Taking time away from school, missing things like prom, or postponing starting college are hard conversations. There are some incredible schools that will work to accommodate virtual learning or are better at providing support for students experiencing brain fog or fatigue.”
If possible, providing any of the normalcy that comes with attending school or social functions can go a long way toward supporting a patient’s mental health.
Monitoring Mental Health
Evaluating AYA patients for low mood, depression, and anxiety is an important component of comprehensive treatment.
“In Australia, we try to have a model of care for every young person to meet with a psychologist for a psychological assessment,” Dr. Sansom-Daly said. “These assessments help us get a sense of who they are and assess their risk for anxiety or low mood.”
Where referral for assessment isn’t standard of care, asking a patient how they are doing can help, as can referring them to outside resources like peer support groups.
“When I was coming up through training, it was thought that this age group wasn’t interested in support groups, but in reality, that seems to be something they actually want,” Dr. Wolfson said.
There is a normative transient distress that goes along with a cancer diagnosis, but it is important to identify when that distress is becoming unmanageable. One recent study of AYA patients with cancer found that these patients were almost 50% more likely to have received a depression diagnosis and had 32% increased odds of intentional self-injury compared with their peers without cancer.8
“These patients also experience a lot of anxiety and worries about the future,” Dr. Sansom-Daly said. “If it’s not certain that the cancer is curable, you can work with patients in processing that and the anticipatory grief and other emotions that go along with that knowledge.”
Dr. Sansom-Daly has contributed videos on these topics to the “Getting Cancer Young” YouTube channel, which is an excellent resource for patients, she said. These wide-ranging videos were created by young cancer patients, their families or friends, and specialist health care providers; the videos tackle topics including friendship, feelings of resentment, dating, what to bring to the hospital, chemotherapy side effects, working with schools, and much more.
Acknowledging Financial Toxicity
Financial toxicity is often an unappreciated issue faced by AYAs diagnosed with cancer. For example, Dr. Isenalumhe discussed a 22-year-old patient she spoke with recently whose leukemia had relapsed after two transplants and two chimeric antigen receptor (CAR) T-cell therapy infusions.
“Her biggest issue was financial; she could not come back to me for treatment because of financial toxicity,” Dr. Isenalumhe said.
In the U.S., low health insurance rates among young adults can hinder access to quality health care.9
“Add a cancer diagnosis to that, with the significant out-of-pocket costs that patients will face, and these patients, many of whom are just achieving financial independence from their parents, are faced with a very different experience,” Dr. Wolfson said.
Profound financial toxicity can occur in this age group, and in some situations, this can lead to treatment decision modifications.10 For example, Dr. Wolfson said studies have shown a lack of medication adherence among AYAs diagnosed with cancer, and work is needed to dig into the reasons behind this lack of adherence, including whether financial toxicity is a driver. Financial toxicity can be an issue even into survivorship, with one survey of AYA cancer survivors showing long-term financial hardships, including lower credit scores, debt collection contact, and lacking money for basic necessities.11
More Research Needed
Dr. Molina said another big issue related to AYAs with cancer is a decrease in clinical trial enrollment compared with children and older adults, and this drop-off limits advancements.
Dr. Molina and colleagues at Cleveland Clinic, along with a few other institutions across the country, are working as part of a pilot project that will focus on how to better integrate pediatric and adult clinical trials in leukemia to facilitate cross-trial enrollment.
Increased trial enrollment in all areas could help fill knowledge gaps on the needs of this patient population, including addressing their long-term care needs and considerations, he said.
Dr. Wolfson’s AYA practice is based out of a pediatric center. She treats patients who have completed therapy for as long as they choose, regardless of age, and works to transition them to other adult subspecialty providers like cardiologists or endocrinologists. However, she acknowledges that this isn’t an option for every AYA patient. If that ongoing care isn’t available, the patient should be provided with a treatment summary and care recommendations, and encouraged to speak with future providers about their cancer history and treatments.
“The reality is these patients will have long-term health and quality-of-life issues that they will need support with, and this is probably one of the most important areas of treatment that we don’t do well with,” Dr. Molina said. “These patients may need additional or earlier cancer screenings and can’t always depend on future providers to have the knowledge or experience to deal with that. Patients must understand that their transition to having a long life involves at least yearly visits and upkeep to screen for possible long-term consequences of the therapies we used.”
- Bleyer A, Barr R, Hayes-Lattin B, et al. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer. 2008;8(4):288-298.
- National Cancer Institute. Adolescents and Young Adults with Cancer. https://www.cancer.gov/types/aya.
- Scott AR, Stoltzfus KC, Tchelebi LT, et al. Trends in cancer incidence in US adolescents and young adults, 1973-2015. JAMA Netw Open. 2020;3(12):e2027738.
- National Cancer Institute. Cancer in Children and Adolescents. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet.
- Haines E, Asad S, Lux L, et al. Guidance to support the implementation of specialized adolescent and young adult cancer care: a qualitative analysis of cancer programs. JCO Oncol Pract. 2022;18(9):e1513-e1521.
- Su HI, Lee YT, Barr R. Oncofertility: meeting the fertility goals of adolescents and young adults with cancer. Cancer J. 2018;24(6):328–335.
- Mulder RL, Font-Gonzalez A, van Dulmen-den Broeder E, et al. Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2021;22(2):e60-e80.
- Qiao EM, Qian A, Mariano DJ, et al. Impact of depression among adolescents and young adults with cancer. J Clin Oncol. 2022;40(16 suppl):6549-6549.
- Bleyer A, Ulrich C, Martin S. Young adults, cancer, health insurance, socioeconomic status, and the Patient Protection and Affordable Care Act. Cancer. 2012;118(24):6018-6021.
- Danhauer SC, Canzona M, Tucker-Seeley RD, et al. Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer. Psycho-Oncology. 2022;31(4):597-605.
- Thom B, Friedman DN, Aviki EM, et al. The long-term financial experiences of adolescent and young adult cancer survivors. J Cancer Surviv. 2022;1-11.
Advice From People in the Know
The YouTube channel “Getting Cancer Young” hosts nearly 700 videos that focus on what it’s like to live with cancer as an adolescent or young adult. Recorded by patients, the videos cover topics ranging from the practical, including tips on dating, to the emotional, such as finding out you’re terminally ill. Health care specialists have also contributed videos that explain terms and treatments that are unfamiliar to AYAs. Check out this valuable resource at youtube.com/@gettingcanceryoung5063.