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As a childhood cancer survivor, Katie, 35, has unique health care needs. The cancer treatments that saved her life when she was a college student have caused some chronic medical conditions. These are known as late effects.
As a result, the busy wife, mother, and teacher must see several health care providers. She has worked hard to develop strong relationships with them. It has taken Katie several years to find just the right team.
Because childhood cancer is so rare, health care providers may never care for a childhood cancer survivor. Those that do may not be aware of the possible late effects of childhood cancer treatment.
“I never saw even one survivor that I can recall before I began working at St. Jude,” said Tim Folse, MD, a family physician who serves as the clinical director for the St. Jude LIFE and After Completion of Therapy Clinic at St. Jude Children’s Research Hospital. “And I didn't appreciate the health risks associated with being treated for childhood cancer.”
Katie was diagnosed with Hodgkin lymphoma when she was 21. She received chemotherapy and radiation. Unfortunately, the cancer returned (relapsed). Katie had more chemotherapy and radiation followed by a hematopoietic cell (also known as bone marrow or stem cell) transplant. Since then, she has been cancer-free.
Katie received radiation to her chest and neck area. That increases her risk for breast and thyroid cancer. Her heart has problems pumping out blood, known as low ejection fracture. She sometimes has difficulties with breathing and swallowing.
So Katie has several care providers – nurse practitioner, obstetrician/ gynecologist, cardiologist, pulmonologist, adult medical oncologist, gastroenterologist, and the medical team at her pediatric cancer center’s long-term follow-up clinic.
After childhood cancer patients complete therapy, they are encouraged to build strong relationships with a primary care provider and specialists in their community. A primary care provider is a health care practitioner who provides general medical care and can refer patients to specialists and other health care services. A primary care provider is typically a doctor, nurse practitioner, or physician assistant. They typically specialize in pediatrics, adolescent medicine, family practice, or internal medicine. A specialist focuses on treating particular conditions.
Since many people, including doctors, may not be aware of her health issues as a childhood cancer survivor, often Katie finds herself in the role of information provider. Many doctors have listened carefully to Katie and work as her partner in making health care decisions. But others haven’t been as receptive.
For example, some doctors have told her that her breathing problems were asthma. They didn’t take note when she explained that her previous radiation treatments were the cause.
“No inhaler is going to fix it. When I hit a road block like that, I just move on,” Katie said.
Katie saw 2 or 3 pulmonologists before she found her current one.
“Sometimes I feel like I’m annoying, but I have to be because I want to live as long as I can. I have a good team now,” Katie said. “It’s important to be totally open and honest with people. Cancer is so widespread. Doctors have people in their life who have cancer, had cancer, or will have cancer. I try to be real with them.”
Dr. Folse stresses the importance of being knowledgeable about your medical history and persistent in advocating for your own health care needs.
“Hopefully the physician will lean in and listen. If not, find another doctor,” Dr. Folse said.
One of the most helpful tools in building a relationship with a primary care provider is the survivorship care plan. This 4-to-6-page document contains a concise, complete record of a patient’s:
It also includes recommendations for healthy living.
The survivorship care plan is the link between the team who provided cancer treatment and the patient’s current health care providers. It is updated each time survivors visit their long-term follow-up clinic.
"Not all patients understand why their survivorship care plan is important the first time they see it, and neither do many providers," Dr. Folse said. "Handing the plan to the doctor once may not be effective because often they just stick it in the chart. It’s just another piece of paper. They need to get used to seeing it regularly. You can use your care plan both to educate your providers and to advocate for your own health.”
So when a young woman who had chest radiation during childhood tells her local provider that she needs mammograms and breast MRIs, she has medical documents to confirm it. The plan may contain details such as a diagram of the radiation field. This visual aid helps doctors see what organs and tissues may have been affected by radiation, Folse said.
“A doctor might say ‘You’re too young. It’s too early to worry about breast cancer!’ No, it’s not. Breast cancer occurs at younger ages and higher rates in women who had chest radiation for childhood cancer,” Folse said.
Dr. Folse said: “Study the plan, make copies, and highlight what’s most important. The survivorship care report helps form that information triad – patient, oncologist, and primary care provider. Be a partner. You’re helping your doctor.”
Katie also has asked her long-term follow-up physician to write letters to her specialists outlining her specific medical issues. Each letter explains what she needs from that specialist.
For example, when Katie visited her gastroenterologist she had a letter from her doctor explaining she needs periodic esophageal dilations (stretching of the esophagus) to treat swallowing problems caused by radiation treatments.
Dr. Folse says he frequently writes letters to specialists for his patients.
“Cancer is a long-term situation,” Dr. Folse said. “Dealing with treatment and its effects can affect a patient’s life forever.”
That’s why it’s important for survivors to build a successful relationship with their medical team members.
Reviewed: October 2018