Coming of age with cancer: ACE helps young survivors thrive
February 9, 2022
Advancements in cancer treatment over the last 50 years have given rise to a wonderful trend: More children with cancer have survived their disease and thrived as adults.
With that progress, though, comes responsibility.
As researchers and clinicians, we knew it would be essential to improve the long-term quality of life and care for pediatric cancer survivors – many of whom experience chronic health conditions such as hypertension, heart failure, diabetes, and kidney and liver disease.
In 1989, UT Southwestern and Children’s Health founded the After Cancer Experience (ACE) Program – one of the first programs of its kind in the U.S. The ACE Program is dedicated to cancer survivor care, education, and research, and our providers monitor the health of more than 2,000 patients up to age 60+, all of whom are childhood cancer survivors.
I joined ACE in 1999 as a pediatric oncologist. My colleagues and I are inspired by the strength and tenacity of cancer survivors, and our goal is to help them resume “normal” lives and activities after cancer. This process can be challenging for many pediatric patients as they transition to adulthood.
We strive to help survivors live healthier and longer by offering comprehensive services from experts at UT Southwestern’s Simmons Cancer Center who specialize in cancer care and research through all stages of patients’ lives. Here are three ways these services contribute to the success of our program – and our patients.
1. Specialized expertise in cancer-related conditions
Following cancer treatment, approximately two-thirds of childhood cancer survivors develop a chronic health complication; these conditions may become severe or life-threatening in one-third of patients. Annual follow-up visits with our providers can help patients prevent or manage cancer-related complications.
ACE providers offer advanced expertise in specific areas of cancer survivorship, such as cancer screenings, cardiology, infertility, mental health, and premature aging.
Survivors are at an increased risk of developing a second cancer. Treatment for Hodgkin’s disease often includes intensive chemotherapy and radiation therapy to the chest. For example, up to 40% of female survivors of Hodgkin’s disease are at high risk of developing breast cancer during young adulthood.
ACE provides regular cancer screenings for our patients, as well as specialist referrals if cancer is suspected.
One of the most common chronic health conditions affecting cancer survivors is cardiac dysfunction. A class of commonly used chemotherapy drugs called anthracyclines is used for upwards of 50% of all childhood cancers. These drugs are an effective treatment. However, they also have a well-known effect on the heart muscle. Children who have been exposed to high cumulative doses of anthracycline chemotherapy have a 6-10% risk of heart failure. Both exposure to radiation therapy and time since exposure are risk factors for heart failure.
The ACE program partners with Pediatric Cardiology at Children's Health as well as the UTSW Cardiology Department and Simmons Cancer Center’s Cardio-Oncology specialists to develop uniform screening and treatment strategies. We encourage survivors to remain engaged in our program, maintain heart healthy lifestyles, and get periodic health screenings. Even if they’re 10 years past treatment and their heart’s functioning well, complications can develop 10 years down the road.
Chemotherapy, radiation, or even surgical treatment for some cancers can increase the risk of infertility later in life. We partner closely with the UTSW Fertility Team to support patients facing this challenge and educate them on advanced fertility preservation options, such as egg freezing and emergency IVF.
During cancer therapy, young patients often feel isolated from their peers. If they’re unable to engage in some of their usual activities growing up, they can lose friendships and support systems, which can lead to depression, anxiety, and other mental health disorders. The COVID-19 pandemic has only made this potential side effect worse.
Mental health screening is included in our standard pediatric evaluations and soon will be for adult survivors as well. If we determine a patient would benefit from ongoing mental health treatment, we refer them to a psychiatrist who can provide in-person or telehealth services.
From diagnosis through therapy, managing cancer causes a premature aging phenomenon. For example, we treat:
- Heart failure in people in their 20s and 30s instead of their 60s and 70s
- Menopause affecting patients in their late 20s
- Strokes in young adults
- Early onset dementia
- Meningioma, a type of brain tumor that is usually found in elderly populations
ACE researchers are developing new and advanced screening methods and treatments to prevent, identify, and treat chronic conditions that affect cancer survivors at an early age.
Related reading: 5 questions patients might be reluctant to ask about radiation therapy
2. Robust research focused on current and future survivorship
Cancer treatment is constantly evolving, which means the patients we treated in the 1970s have different long-term complications and concerns than patients we treat today. Our robust research program allows us to provide personalized care that survivors need based on their previous treatments.
For example, CAR T-cell therapy is a newer type of immunotherapy that helps the immune system attack cancer cells without damaging healthy cells. It hasn’t been around long enough for anyone to fully understand its long-term implications.
Children’s Health has one of the largest populations of pediatric patients receiving CAR T-cell therapy. As patients survive their cancer, we can monitor them closely to identify potential future complications, such as an increased risk of infections due to immune system deficiencies.
Related reading: Multiple myeloma care: Taking CAR T-cell therapy for rare blood cancer to the next level
3. Coordinated transitions from pediatric to adult care
In many other centers, pediatric patients turn 18 and age out of their cancer care program – but at Children’s Health, we coordinate transitional care to our adult cancer survivorship programs at UT Southwestern, led by Dr. Rebecca Eary, D.O., M.P.H. Patients continue to have a dedicated team of providers and support services professionals that are familiar with their medical history and experienced with managing cancer survivorship care.
We also offer a Young Adult Support Program at Simmons Cancer Center for patients ages 18-39. The group meets monthly.
Every patient’s experience with cancer is unique, and so is their desire to receive ongoing care after treatment. Our goal is to see all adult patients at least once a year to evaluate their physical and mental health.
Some patients don’t want to be routinely reminded of their battle with cancer and choose not to return. We understand why they feel this way but will always emphasize the importance of proactive screening to prevent or lessen the effects of diseases that may develop later in life.
Resilience despite risks
While childhood cancer can be a devastating diagnosis, survival rates continue to increase – and we see a lot of resilience and growth among survivors.
Several patients have told me their cancer diagnosis inspired their personal and professional goals later in life. In fact, some of our nurses who work at the Gill Center for Cancer and Blood Disorders at Children’s Health are childhood cancer survivors who chose a career that would allow them to give back to others facing similar health challenges.
No matter what stage of life a cancer survivor is in, consistent, personalized care is critical to protecting their overall health. For decades, the ACE program has empowered patients through education and customized treatment and will continue to improve survivors’ quality of life for many years to come.
To talk with a pediatric cancer expert in the After Cancer Experience Program, call 214-456-2978 (Dallas) or 469-303-4400 (Plano), or request an appointment online.