What is aya?
AYA is an acronym that means adolescent and young adult. AYA oncology is defined by the National Cancer Institute as cancer care or research focused on those diagnosed with cancer between the ages of 15 to 39 years old.
There are many reasons for this age definition, both biologic (menarche to menopause) and developmental (independence from your parents’ care to taking care of your parents). The age range is meant to be broad enough for inclusivity, but it is accepted that, for a given task (like a support group), only a subgroup of the age range might be appropriate.
What makes aya cancer different?
AYA cancer patients are an underserved population
AYA cancer accounts for more than 6% of all cancer diagnoses each year, 8X as many cases as pediatric cancers, which represent less than 1% of all cancer diagnoses during the same period.
The incredible focus on pediatric cancer has resulted in large improvements in survival for children. There is specialized training for physicians and nurses, dedicated clinical trial networks, designated research agendas and budgets, specialized inpatient and outpatient environments and more.
There is a limited focus and even fewer resources for the AYA population. AYA oncology needs a focus similar to pediatric oncology to achieve the same improvements in survival and quality of life.
Their bodies respond to treatment differently
For many cancers, survival rates decrease based on age. For example, under the microscope, a tumor like Ewing’s sarcoma may look the same for a 5-year-old and 30-year-old, but the average 5-year survival rate for the child is 70% while that for the young adult is 45%.
If you are only used to treating adults, a 45% average 5-year survival rate may seem “acceptable,” but once you know a child with the same tumor makeup responds to treatment much better, it impassions you to improve treatment outcomes for AYAs. The difference can sometimes be a matter of life or death.
survival varies based on expertise
Young people, ages 15 to 25, are caught in a medical gray area. They can receive cancer care from a pediatric or adult oncologist. On the surface, that doesn’t seem like a big deal, however, researchers have discovered that pediatric and adult cancer treatment regimens lead to significant differences in cancer survival.
In the case of acute lymphoblastic leukemia, the difference was a 5-year patient survival rate of 67% when using a pediatric regimen versus 46% when using an adult cancer treatment regimen. The data reinforced a need to delve deeper into the issue and understand the differences in treatment approaches and its impact on patient outcomes, especially when considering that approximately 66% of 15 to 19-year-olds are never seen by a pediatric oncologist.
AYA Survival rates have barely improved
Despite cancer being the no. 1 cause of disease-related deaths in 15 to 39-year-olds, more than half of all evaluable AYA cancers have shown no improvement in their 5-year survival rates over the past 30 years. Over the same period, survival rates for children and older adults have experienced dramatic improvements.
There are many reasons we haven’t seen much improvement in survival rates for this population. They include delayed diagnoses, non-adherence to medical treatment, a lack of AYA-focused care, limited understanding in the differences in AYA biology and low AYA participation in research-based clinical trials.
Explore the tabs to learn more.
When a cancer diagnosis is delayed, it can result in later-stage, difficult-to-treat cancers. Late stage cancers are complex, spread to other areas of the body and significantly decrease a young person’s odds of survival. Delayed diagnosis can be attributed to many factors that include:
- Some physicians very seldom see a young adult patient walk into their clinic. Because of a young person’s age, they are more likely to receive a misdiagnosis or be referred to specialists they don’t need
- Not knowing their risk or family medical history.
- Engaging in riskier behavior such as sun or tanning bed exposure, smoking, sex, obesity, poor nutrition and lack of exercise
- No knowledge of cancer symptoms
- No annual physicals
- Lack of health insurance
- Discomfort or intimidation talking to certain doctors
- Often times, AYAs who do suspect cancer symptoms will avoid seeing a doctor because they fear it will be true
AYAs are more likely to be inconsistent with therapy, follow-up and survivorship plans due to:
- Life and family transitions
- The cost of treatment and financial toxicity
- A lack of age-relevant resources and understanding
- They desire a return to normalcy
- Other significant medical barriers that include a lack of health insurance and the cost of follow up care
Lack of AYA Expertise
There is a lack of trained AYA Oncology providers, teams and programs. Providers are either trained as pediatric providers – where the focus is on the caring for young children with pediatric cancers – or at medical oncology providers, where the focus is on caring for adults with adult cancers.
85-90% of patients in a pediatric hospital are under 15, so services and delivering are geared towards them.
90-95% of patients in an adult hospital are over 40, so the services and delivery are geared towards the older patients.
The AYA patient is LOST IN THE GAP.
Difference in Biology
There is limited understanding of the difference in the biology of tumors in AYAs compared with children and older adults. Perhaps it’s a difference in the way an AYA metabolizes or tolerates chemotherapy. Perhaps the hormonal and cellular signaling around the tumor is different in an AYA body. Perhaps the pathogenesis of the same tumor is different depending on the stage of life.
There is a significant need for AYA-focused biologic research. We just know that AYAs respond differently to treatment compared to other aged populations, prompting a significant need to fund and execute AYA-focused medical research.
Limited Clinical Trials
Clinical trials ensure the cure rates we have today will not be the same tomorrow. Enrolling AYAs on Clinical trials helps gather important information on difference in biology and response to treatment, and early phase clinical trials give access to new and emerging therapies.
Early detection saves lives
We can’t always prevent cancer, but the earlier it is detected, the more likely a young adult life will be saved.
Regular checkups with a doctor who knows you and your medical history are recommended on an annual basis. You should also know the symptoms of cancer. If you experience any of them, make a doctor’s appointment. Better safe than sorry, and in this case, it’s really true.
Know the symptoms of cancer, learn how to check yourself, get immunized and learn how to talk to your doctor about your body. Here is a link to help you detect cancer early. It might just save your life.
These are the most commonly diagnosed AYA cancers. Find out what they are, how they’re treated, their side effects and more.
tailored support for you
Now that you know “AYA” isn’t someone’s name, why an entire community is focused on this subset of our population and how we’re working to improve the lives of local teens and young adults, we hope you explore our website, which is designed just for you.
If you’re an AYA: we have information and resources designed to make your life and cancer journey a little easier.
If you’re a medical provider: we can help you navigate young adult patients, provide education or answer any questions.
If you’re a supporter: we need your help, skill set and passion to help us make a difference.