Mapping the Journey

Care plans outline what's next for survivors.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Diagnosed with stage 3 breast cancer in 1997, Pam Cofer, now 54, developed arthritic nodules in her hands within six months of completing chemotherapy. She also underwent four back surgeries and a hip replacement because of arthritis during 2005 and 2006, and in 2008 she had an abnormal stress echocardiogram.

The Utah nurse and co-founder of the nonprofit Journey Beyond Cancer ( says the physical issues didn’t make sense—she was active and, before cancer, healthy. So Cofer began researching, which led her to Patricia Ganz, MD, an oncologist at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles, who specializes in long-term and late effects of cancer.

After taking a history of Cofer’s treatment, Ganz explained to her that chemotherapy had induced chemical menopause. This caused Cofer’s genetic predisposition for arthritis to advance rapidly instead of slowly over 30 or more years. Ganz also referred Cofer to a cardiologist who diagnosed her with diastolic dysfunction, a late effect of some chemotherapy drugs in which the heart doesn’t completely relax between contractions.

Ganz prepared a survivorship care plan for Cofer that outlines specific recommendations for managing late effects and for routine screenings to monitor for future cancers. Cofer returned to Utah and met with her primary care physician, who was more than willing to confer with Ganz about Cofer’s health and to complete the tests outlined in the survivorship care plan, including echocardiograms and blood work.

“They decide together on the next course of action,” Cofer says. “My heart problem is a ‘cutting-edge diagnosis,’ according to my cardiologist, and my primary care physician understands strongly the importance of working with the team.”

With more cancer patients living longer, follow-up care will move to primary care physicians, lifting the burden currently placed on the decreasing number of oncologists. But this shift also requires that the physician and the patient understand the complex and unique challenges facing cancer survivors.

According to the 2005 Institute of Medicine report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” oncologists should provide every patient with a treatment summary and follow-up plan to monitor for long-term and late effects, recurrence, and new cancers. According to a recent article published in the American Journal of Nursing, almost 75 percent of survivors experience long-term and late effects, in part from the treatment for first cancers that may cause additional health problems such as osteoporosis, cataracts, and diabetes.

While a number of cancer centers have developed their own care plans, no single plan or approach has been adopted as the standard of care, and oncologists do not routinely generate them, says Kenneth Miller, MD, director of the Connecticut Challenge Cancer Survivorship Clinic at Yale Cancer Center.

Miller encourages patients to ask their cancer doctors for an end-of-treatment summary that includes the diagnosis, treatment, and specifics as to what they should do next. Patients should also ask for a question-and-answer session where they take notes.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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