Tim Folse, MD, often enters an exam room at St. Jude Children’s Research Hospital and offers a handshake to a long-term survivor. But he was taken aback when a 37-year-old Hodgkin lymphoma survivor gripped his hand and held on. The patient had suddenly realized that Folse’s father (also a doctor) had diagnosed the patient’s cancer 30 years before.
That powerful moment emphasized more than the shared profession of father and son. It also highlighted the mighty ripple effects of follow-up care for adult survivors of childhood cancer.
More than 500,000 childhood cancer survivors live in the U.S. today. St. Jude closely tracks and educates its survivors. The hospital also helps them build relationships with primary care providers in their hometowns. By receiving regular medical care throughout their lives, survivors can have the best health possible.
Creating a Roadmap
Research shows that about 98% of childhood cancer survivors have at least one chronic health condition as a result of cancer or its treatment. The long-term side effects can range from problems with the heart or lungs to the development of new cancers.
St. Jude wants to help survivors stay on top of their health. That’s why the hospital provides a detailed survivorship care plan that survivors can share with their hometown doctors or nurse practitioners. Each health care provider can read that plan to learn about the survivor’s history and health risks. The plan also outlines which medical tests are needed and when.
“We try to leave no stone unturned as far as giving patients information about how to access care or other resources,” says Folse, clinical director for St. Jude LIFE long-term follow-up study and the After Completion of Therapy (ACT) Clinic.
St. Jude patients visit the ACT Clinic until either age 18 or 10 years after diagnosis, whichever is later. ACT “graduates” receive three-ring binders that contain their survivorship care plans and information from their initial diagnosis and treatment. The binder also includes tips on insurance coverage, fertility treatment, disability programs, scholarships and other topics.
In spite of careful planning, obstacles sometimes arise. Hometown doctors and health insurers may not understand why a survivor requires certain medical tests at an early age. For instance, a girl whose cancer therapy includes chest radiation faces a risk of breast cancer that’s 25-times higher than that of the average woman. As an adult, this survivor needs mammograms and breast MRI scans every year starting eight years after radiation or at age 25, whichever is later.
If physicians or insurers disagree with this testing schedule, St. Jude can step in. Staff members will explain the reasons, based on data from St. Jude and the Children’s Oncology Group, a clinical trials group supported by the National Cancer Institute.
“I see it as a unique privilege to be able to provide education to patients and hometown doctors,” Folse says. “Primary care doctors will be better equipped if we can continue to increase their exposure to the needs of our survivors. Even after four years of medical school, three years of family medicine residency and 20 years of community family medicine, I had very little knowledge of the long-term late effects risks that can be due to childhood cancer treatment.”
Going to bat for patients years after their cancer treatment ends isn’t unusual for St. Jude. But survivors are also urged to stand up for themselves to ensure they receive the best follow-up care.
“They need to be their own advocates,” Folse says.
Survivors: Take control of your health
- Read your survivorship care plan.
- Schedule recommended tests.
- Share the plan with your hometown medical providers.
- Sign up for the St. Jude patient portal at www.stjude.org/mystjude. Then, tell your providers how to log in. They’ll find details about your history and the tests you need.
- Encourage your providers to call St. Jude with questions at (901) 595-3658.
- Change providers if they refuse to follow your survivorship care plan. Check out the Late Effects Directory of Services at childrensoncologygroup.org.
- Contact St. Jude if your doctor or insurance company hesitates to provide suggested screenings. St. Jude staff will explain to them why the guidelines must be followed.
- If you have medical issues, let St. Jude know so they can update your survivorship care plan.
From Promise, Winter 2020