MedBlog

Cancer; Pediatrics

Supporting adolescents and young adults through cancer treatment and beyond

Cancer; Pediatrics

For adolescents and young adults who develop cancer, the first question is often “Aren’t I too young to have cancer?” Many of these patients feel as if they’re the only person their age with cancer.

But it’s far from true. Estimates suggest that by the end of 2025, there will be about 85,000 new cancer cases in this patient population (ages 15-39) in the U.S., accounting for 4.2% of the country’s annual cancer diagnoses.

While the rates of new cancer cases among older adults have stabilized or even decreased in recent years, an increasing number of adolescents and young adults have become cancer patients. Statistics show the disease is this age group’s fifth-leading cause of death.

Young adults who develop cancer face unique challenges compared with other age groups because the illness occurs during a crucial time of personal growth and relationship building. This is why giving voice to patients’ priorities for treatment and setting goals for survivorship – life after cancer – is so critical for adolescents and young adults. In the treatment of younger cancer patients, it’s vital for their care team to recognize that each case will require different treatment options, support resources, and survivorship care – and to be trained in these areas.

Making this more imperative is that even when an adolescent or young adult’s cancer has been cured, treatments can cause health problems later and sometimes lead to death. Studies show there are higher rates of suicide, heart disease, and other cancers among cancer survivors compared with the general population.

UT Southwestern and Children’s Health have an adolescent and young adult working group that meets regularly to discuss cases and identify ways to improve care for young cancer patients across both institutions. The National Comprehensive Cancer Network recommends that all adolescent and young adult cancer patients receive care in centers with specialized expertise in caring for this population, as this approach has been shown to significantly improve outcomes.

Unique challenges for young cancer patients

When an adolescent or young adult receives a cancer diagnosis, their care team emphasizes hope and the possibility of cure. The focus is on treatment and not on future issues or life after cancer.

A young cancer patient talks to her doctor.
An increasing number of adolescents and young adults are developing cancer, and they face unique challenges because the illness occurs during a crucial time of personal growth. It's vital that patients' care teams focus on their priorities for treatment and goals for survivorship.

But many young adults want the opportunity to discuss after-cancer goals with their providers, whether that’s school, career plans, or having a family. In a national survey, only 50% of adolescents and young adults reported that a provider discussed options regarding fertility before cancer treatment began. It’s crucial that providers be open to discussing any topic that patients or their families want to cover.

Because getting a cancer diagnosis is so disruptive and stressful for a young person who may not have had much of a chance to start making life plans, the importance of the patient’s care team in addressing potential problems such as depression and post-traumatic stress disorder during treatment becomes multiplied.

Adolescents and young adults with cancer have lower survival rates compared to children for several cancer types – a phenomenon often referred to in the medical literature as the “AYA gap.”

Why the discrepancy in survival rates?

Several factors may contribute to the stark differences in cancer survival rates for adolescents and young adults:

  • Those between the ages of 15 and 39 are less likely to participate in clinical trials, which slows the development of newer and more effective age-appropriate treatments.
  • There is a lack of support services for the unique psychosocial challenges of this age group such as:
    • A loss of independence
    • Body image and self-esteem issues
    • Anxiety and depression
    • Difficulty in expressing emotions
    • Disruption of social relationships and feelings of isolation
    • Concerns about fertility and future family planning
  • The transition from pediatric health care to adult health care isn’t always well-managed.
  • There may be disparities in access to care in specialized AYA oncology programs, as many providers are not trained in the unique needs of this age group

Improving treatment outcomes

In an effort to close this gap, the National Comprehensive Cancer Network published a manual with guidelines for oncologists treating cancer patients in this age group. These recommendations are also directed at patients, who can see what their providers should be focusing on and be active participants in their care.

The organization cites three broad themes to help close the gap:

  • Encouraging physicians to use cancer treatments specific to adolescents and young adults, including clinical trials.
  • Advocating for supportive clinical resources for these patients focused on fertility, return to work, and mental health and social work support.
  • Bringing survivorship care to the forefront of providers’ minds and tailoring cancer treatment with survivorship care as a goal for patients.

Because getting a cancer diagnosis is so disruptive and stressful for a young person, the importance of the patient’s care team in addressing potential problems such as depression and post-traumatic stress disorder during treatment becomes multiplied.

Vivian Irizarry Gatell, M.D.

When to treat aggressively

Research has shown that blood cancers diagnosed within this age group, such as acute lymphoblastic leukemia (ALL), tend to be more aggressive than those in children due to biological differences. The treatment challenges and outcomes young patients with ALL often face contribute to the survival rate differences exemplified by the AYA gap.

Before 2008, the standard of care for treating patients in their late teens with ALL was an adult chemotherapy regimen at an adult hospital. That’s because pediatric treatments are often more intense and at higher doses compared with adult treatments. But, as researchers have found, pediatric dosages are also more effective among adolescents and young adults, so more academic medical centers are choosing that strategy to treat them.

The key is to determine how aggressive the cancer is. When a patient comes to UTSW with acute lymphoblastic leukemia, we do a bone marrow biopsy and molecular tumor testing to look at the presence of driver gene mutations. We also perform measurable residual disease (MRD) testing – specialized testing to detect extremely low levels of cancer cells and help guide next steps in treatment. If results show more aggressive disease, we’ll use a more aggressive treatment approach. One of those options is a bone marrow (stem cell) transplant.

What young adults should know about the journey

For adolescents and young adults with cancer, as well as their families, know that:

  • You’re not alone. Yes, more young patients than ever are receiving cancer diagnoses. But the more my patients are aware other people around them have what they have, the more comforted they feel during treatment. Because it’s always nice to have someone to support you through this journey.
Teenage friends hang out together eating pizza.
Young cancer patients should take solace in knowing they are not alone, Dr. Vivian Irizarry Gatell says. If they realize other people around them also have cancer, it helps them feel more comforted during treatment.

  • Don’t be afraid to be your own advocate. There may be things your doctors/providers miss. If it’s concerning to you and you’re stressed about something in your cancer care, odds are your doctor wants to know about it. Sometimes it can help guide treatment and help providers tailor treatment to you.
  • There is a life after cancer. And studies show that the life after treatment can be really good and on course with what your life would have been like if you didn’t have cancer. The best way we know to get you on track to live the rest of your life is to be diligent about treating you appropriately and making sure we know what your goals are.

Improving clinical outcomes for adolescent and young adult cancer patients requires improved research, supportive resources, and careful consideration of their specific needs. Health care providers should continue to advocate, have frequent discussions with their patients, and educate their colleagues to help achieve this goal.

To talk with an expert about treatment for adolescent/young adult cancers, make an appointment by calling 214-645-4673 or request an appointment online.

Learn more about our Young Adult Cancer Support group.

Resources