Two years ago, I “graduated” from my oncologist’s care. Five years after successfully undergoing treatment for stage IIB breast cancer — chemotherapy, a lumpectomy and lymph node removal, six weeks of radiation and then a year of the drug Herceptin — my doctors at Memorial Sloan-Kettering Cancer Center in New York deemed me ready for a less intensive approach to managing my health.
Early on in my post-cancer days, I’d visited the oncologist every six months for a checkup. Then, it became once a year. Now, I still return to Sloan-Kettering annually, but instead of seeing an oncologist, I meet with a nurse practitioner who heads up the cancer center’s survivorship program. It honestly doesn’t feel that much different to me. I still get my mammogram, they still check my blood for unusual levels of different proteins and hormones, and a highly trained expert — albeit not one with an M.D. degree — still examines me and discusses my health concerns.
It’s not the easiest thing in the world to get into Manhattan for these appointments, and I could probably schedule something with a primary care doctor much closer to my home in New Jersey and save over an hour in round-trip travel time (not to mention parking fees). But I can’t bring myself to do it. I can’t “break up” with the experts who saw me safely through the nightmare of a highly aggressive breast cancer diagnosed when I was just 36 years old.
This is the dilemma facing many cancer survivors today, as early diagnosis and new treatment options mean that we are living longer and longer, and often with no evidence of disease whatsoever. Although doctors may be cautious about using the term, many of us are “cured,” and we’ll probably go on to live long, healthy lives and die many years from now of something other than cancer.
But are we really comfortable having our health concerns, our long-term side effects from treatment — everything from nerve pain, numbness and swelling to infertility and impotence, depression, secondary cancers and “chemo brain” — managed by doctors and nurses who aren’t specialists in our disease?
Many of us aren’t. According to a 2005 article in the British Journal of General Practice, “the majority of breast cancer patients prefer routine tests and periodic routine visits for 10 years or longer by specialists. That is, patients prefer a pattern of follow-up care that reflects the practice they are accustomed to rather than evidence of what is effective.”
And a new study published in the Journal of General Internal Medicine in July suggests that our oncologists don’t feel comfortable handing our care over to primary care docs, either — and those primary care docs might feel rather unsure about their own capabilities as well.
In a survey of medical oncologists and primary providers conducted by Arnold L. Potosky, director of health services research at Georgetown University’s Lombardi Comprehensive Cancer Center, less than 60 percent of primary care providers agreed that they possessed the skills needed to care for treatment effects in breast and colon cancer survivors. Only 23 percent of them felt very confident in their ability to care for the late physical effects of cancer or its treatments.
Oncologists took an even dimmer view. Only 38 percent of oncologists thought primary care providers could appropriately initiate screening or diagnostic testing to detect recurrent breast cancer, for example.
But the reality is that as more and more of us live longer and longer, it just doesn’t make sense for us to be treated as cancer patients, by cancer doctors, years and years after our last dose of chemotherapy or radiation, with the cancer long since silent. So how can we make that transition from the oncologist’s care to the primary care doctor’s purview? How can we learn to trust the “non-specialist” with our special concerns?
There are a number of programs designed to help cancer survivors take the sometimes-intimidating steps beyond the “treatment world” and into the “survivor world.” One is Journey Forward (www.journeyforward.org), a survivorship care planning resource that offers a range of tools for both the oncologist and the cancer patient. The doctor can use the free online “survivorship plan builder” and “medical history builder” to develop a detailed history of the patient’s treatments and plan for care going forward that the patient can take with them to all future medical appointments. Patients can download their own toolkits, which explain the importance of a survivorship plan, recommend questions to ask doctors, and provide a list of resources.
Or survivors can generate their own “Livestrong Care Plan” using the detailed questionnaire available online from the Lance Armstrong Foundation (www.livestrongcareplan.org). It lacks some of the personal detail that a care plan from your oncologist provides, but it’s pretty comprehensive.
In an interview with Medscape Medical News, Potosky suggested that the broader use of these survivorship plans could help break down the barriers between oncologists and primary care providers — perhaps making it easier for cancer survivors to get follow-up care closer to home. “I think the key message that comes most directly from the paper is the need for doctor-to-doctor communication,” he said.
About the Author
Gina Shaw is the medical writer for The Washington Diplomat.