The radiologist uttered the words “cancer-free” after reviewing the results of my whole-body positron emission tomography (PET) scan with me as I sat in the long, empty hallway at the imaging clinic. My journey was far from over, but I didn’t know it then.
At my next appointment with the endocrinologist who had treated my thyroid cancer, she reviewed the results of the PET scan but declared my bloodwork showed thyroid cells remained in my body, as determined by a marker called thyroglobulin. My treatment had been intended to eliminate all thyroid cells from my body and thus any cancerous cells. “We’ll have to keep monitoring you,” she said. “If the number goes up, we’ve got trouble.” Monitoring for how long? A month, a few years, a lifetime? How long is a cancer journey? It was only many years later that I learned about survivorship care plans from a colleague and fellow cancer survivor.
According to the Centers for Disease Control and Prevention, “a survivorship care plan is a record of your cancer and treatment history, as well as any checkups or follow-up tests you need in the future. It may also list possible long-term effects of your treatment, and ideas for staying healthy.” All of this information is important not only for your personal records, but for your health care team’s records.
Cancer patients tend to have a large health care team with many specialists, including oncologists, cardiologists, gynecologists, endocrinologists, pulmonologists and others, depending on the type and extent of their cancer. For example, rather than seeing an oncologist, I see an endocrinologist, but I also have a primary care doctor, a gastroenterologist and a psychiatrist, among others. As a patient, the complexities can be debilitating—coordinating appointments, remembering passwords to a plethora of patient portals, and keeping track of which medications to take at what times. It’s even more frustrating when electronic health record systems used by hospitals and medical practices fail to “talk” with one another, resulting in your doctor asking you what happened at past appointments with other doctors. You’re left compiling all of your paper records and lugging a giant binder to each appointment, hoping that some of the information will be useful in describing your health at that moment.
In 2006, the Institute of Medicine issued a report called From Cancer Patient to Cancer Survivor: Lost in Transition that recognized the unmet needs of survivors. The group made a recommendation that all cancer patients receive a survivorship care plan from the principal providers who coordinated their cancer treatment. Unfortunately, these plans are not mandatory. Rather, it is up to the oncologist or other cancer care provider to compile the necessary information. Patients may need to advocate for their health by requesting that a survivorship care plan be created. This complete snapshot of their health can then be referred to by any member of the patient’s health care team. This is especially important when going to a new doctor or switching doctors. While a complete medical record can be faxed over or printed and brought to an appointment by the patient, a survivorship care plan compresses this information into a few pages.
Additionally, some institutions offer cancer survivorship care plans. In 2019, two years after finishing cancer treatment, I contacted the Cancer Survivorship Program at MedStar Georgetown Cancer Institute in Washington, D.C., to have a plan created for me by an oncologist. Although I was not treated at this hospital, it was near my home in northern Virginia, and it was easy to make an appointment and have my medical records sent over from my doctors’ offices for review and compilation. At the appointment, the doctor thoroughly went over my treatment and medical history, inquired about different aspects of quality of life like relationships, finances and career, and created a survivorship plan that I could understand and provide to doctors in the future. Having this snapshot of my cancer journey has comforted me, and the succinctly laid out details have guided me forward. Not all hospitals have survivorship programs for cancer patients; however, doing a quick Google search for cancer survivorship program generates links to a number of institutions that do. (Many are National Cancer Institute-designated cancer centers or hospitals in large cities.)
Going through cancer is difficult, and the next steps for patients after treatment should not be in doubt. Building a survivorship care plan with a physician that clearly outlines future steps and proactively addresses quality-of-life issues prepares patients for better health outcomes.
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September 14, 2020