When facing cancer, adolescents and young adults (AYA) often confront different personal, psychosocial and medical challenges than younger children and older adults with the same diagnosis. That's why the University of Chicago Medicine created the Adolescent and Young Adult (AYA) Oncology Program — a collaborative program offering coordinated cancer care for young adults ages 15-39.
Our goal is to provide a comprehensive, one-stop model of care to ensure state-of-the-art therapy and psychosocial support for young adults in significant life transition. We also work to foster treatment compliance and the development and administration of long-term survivorship care plans.
We help AYA patients take an active role in their care and navigate the medical system. We also work with this group to help them understand their diagnosis and make decisions regarding their treatments. Our cancer specialists have the clinical experience, the scientific knowledge and the resources to determine which treatment protocol offers the most effective therapy to meet each patient’s unique needs.
I was 18 when I was diagnosed.
I was just not feeling well because it was, like, the Christmas season and I had finals. And when you work retail, it's such a rush. And you're just thinking, oh, I just don't feel good because I'm working extra hours. And then I just didn't get better, and I didn't get better.
Then, I was at work and I fainted. That was a sign that I needed to go to the doctor, that I needed help. There was something wrong with me at that point.
It was a real shock when we got the diagnosis of cancer. I don't think anybody ever expects that, especially with your children. It's so painful. And we -- I knew that our whole life was going to be changed by it.
They started the treatments immediately. So there was no delay. He strongly recommended Comer Children's Hospital. He said, “If it was my kid, that's where I'd take her.”
We got our appointment right away, went in and met Dr. McNeer -- wonderful, wonderful woman and great doctor. She saved Rachael's life. I know she did.
Rachel was diagnosed with acute lymphoblastic leukemia, or ALL. And this is a leukemia that we see very often in pediatrics. It becomes less common in patients as they get into adulthood. But we have learned that young adults with ALL have better survival outcomes when treated with pediatric protocols. And so by referring Rachael to our adolescent and young adult oncology program, we were able to treat Rachael on one of these pediatric protocols and give her the best chance of cure.
Rachael was great. She was very positive the whole time and never complained at all about anything we asked her to do.
The following eight or nine months was pretty heavy chemotherapy regime where I lost all of my hair. And I was sick. I was in and out of the hospital a lot.
I just tried to remember that, you know, it's not the time -- it's not what you're given, it's what you do with the time that you're given. It's not about how many years you get, but what you do with your years is really what's important. And just trying to stay positive and to the fact that even if you don't get better, it's still a -- it's still a way to look at life in a way that most people don't get a perspective on.
Rachael is a beautiful person. And I think she found a lot of strength in poetry and reading. Rachael has been in remission for several years. She's cured of her leukemia.
It's not something I would wish on anyone, but at the same time, I would never take it back. It's been -- it's made me who I am.
Bridging the Treatment Gap for Young Adults
While five-year survival rates for AYA patients are improving (currently over 70 percent), they have not kept pace with the steadily increasing rates of survival among young children (over 80 percent). Our cancer care physicians optimize care for young adults by offering specialized services and protocols. We:
- Lead clinical trials targeted to this specific age group
- Offer a collaborative program led by adult and pediatric hematologists/oncologists
- Provide emotional support tailored to young adults, including a dedicated AYA oncology support services
- Refer patients for fertility counseling
- Support and monitor patients to aid them with treatment compliance
- Assist patients with insurance
- Help patients experience a life that is not limited by their diagnosis
A Team of Experts
Our AYA medical team includes nationally known pediatric and adult hematologists/oncologists, dedicated nurse practitioners, social workers, psychologists and a physical therapist. Together, these specialists provide comprehensive diagnostic, treatment, support and follow-up services for AYA patients. UChicago Medicine experts in related disciplines — radiation oncology, radiology, surgery, pathology, psychiatry, genetics, fertility, cardiology, endocrinology and pulmonology — collaborate with the primary team. We are also growing a solid tumor program and working collaboratively with our medical oncology team in the Developmental Therapeutics clinic.
Our inter-disciplinary staff helps adolescents and young adults navigate the medical challenges and personal issues of a cancer diagnosis by providing compassion and support. And by bringing together our pediatric and adult cancer experts, we can offer access to state-of-the-art treatments and the most advanced care available.
We've partnered with Teen Cancer America to help bridge the gap between pediatric and adult cancer care.
A Lifetime of Care
Cancer and its treatment can have an impact on adolescents and young adults long after they have been cured. The Childhood and AYA Cancer Survivor Center offers long-term follow-up and care after treatment and throughout adulthood for survivors of all AYA cancers. Our specialists monitor the impact of the disease on the patient’s growth, organs, fertility, emotional development and more.
Hematologic AYA patients are seen on Tuesday mornings in the Comer Center for Children and Specialty Care, a state-of-the-art outpatient clinic and infusion suite adjacent to the University of Chicago Medicine Comer Children's Hospital.