WHAT IS AYA?
Adolescent And Young Adult Oncology
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AYAS DIAGNOSED WITH CANCER IN THE U.S.
AYAS DIAGNOSED WITH CANCER IN AND AROUND TARRANT COUNTY
WHAT IS AYA?
AYA is an acronym that means adolescents and young adults. 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 biological (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 only a subgroup of the age range might be appropriate for a given task (like a support group).
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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, representing less than 1% of all cancer diagnoses during the same period.
The extraordinary focus on pediatric cancer has resulted in extensive 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 are a limited focus and even fewer resources for the AYA population.
AYA oncology needs a focus similar to pediatric oncology to improve survival and quality of life.
PERCENTAGE OF CANCER DIAGNOSES EACH YEAR: BY AGE GROUP
- PEDIATRIC 1%
- AYA 6%
EWING’S SARCOMA: AVERAGE 5-YEAR SURVIVAL RATE
- 5 YEAR OLDS 70%
- 30 YEAR OLDS 45%
ACUTE LYMPHOBLASTIC LEUKEMIA: AVERAGE 5-YEAR SURVIVAL RATE
- PEDIATRIC TREATMENT REGIMEN 67%
- ADULT TREATMENT REGIMEN 46%
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 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.”
Still, 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 cancer survival differences.
In 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 of the differences in AYA biology, and low AYA participation in research-based clinical trials.
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DELAYED DIAGNOSIS
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 individual doctors
- Often times, AYAs who do suspect cancer symptoms will avoid seeing a doctor because they fear it will be true
NON ADHERENCE
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 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 delivery are geared towards them.
90-95% of patients in an adult hospital are over 40, so the services and delivery are geared towards older patients.
The AYA patient is LOST IN THE GAP.
DIFFERENCE IN BIOLOGY
There is a 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 the difference in biology and response to treatment, and early phase clinical trials give access to new and emerging therapies.
EARLY DETECTION SAVES LIVES
Understand Adolescent And Young Adult Oncology
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 cancer symptoms, 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
Fort Worth AYA Information And Resources
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, skillset and passion to help us make a difference.
Up-Coming Initiatives
AYA Cancer Help & Support | How You Can Help FWAYA Coalition
AYA Cancer Help & Support We can not express the gratitude we feel for those that support & donate their time and resources for the Adolescents & Young Adults in our community. FWAYA has served the community for almost ten years and continues to pull the...
An FWAYA Coalition Story | Candice’s Story
An FWAYA Coalition Story Each year 77,000+ young adults are diagnosed with cancer. My 21-year-old self never thought I would be part of this statistic. My 21-year-old self also never imagined not only living this long but to have REALLY lived. No, I guess I never...
AYA Cancer Story | A Mothers Journey by Laura Rutledge
An Introspective look from an AYA Cancer Mom April 22nd, 2010 is a day that will forever be etched into my memory. It is the day that our happy world of carpooling kids, going to soccer games, proms, college essays, etc. came to a screeching halt. After 11 months of...
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