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By Alanna Kennedy

What Now?

Preparing for life beyond treatment

By Alanna Kennedy


When you think about the end of your cancer treatment, what thoughts go through your head? Maybe you never want to think about cancer again, or maybe you can't stop thinking about it—and the risk of recurrence. Either way, there are preparations that you can make now that may save you from health problems later, and help put your mind at ease after you've completed treatment.

With cancer, the survivorship journey continues for the rest of a patient's life. According to the National Cancer Institute, survivorship refers to the physical, psychosocial and economic issues that patients begin to face from the moment of diagnosis. A survivor's challenges include finding access to good health care, maintaining a satisfying quality of life and dealing with cancer recurrences, second cancers and delayed side effects of treatment.

Once you've left the care of your oncologist, facing these issues can be an intimidating experience. After treatment, cancer survivors are often left to fend for themselves, unsure of what steps to take or how to return to a normal life. "The most difficult part was after finishing therapy and entering surveillance," says Richard Boyajian, a chronic myelogenous leukemia survivor and nurse practitioner at the Perini Family Survivors' Center at the Dana-Farber Cancer Institute in Boston. "The biggest difficulty was the uncertainty of it all."

The Institute of Medicine (IOM) of the National Academies, an independent nonprofit organization in Washington, D.C., addressed these concerns last fall. The institute's new 506-page report, From Cancer Patient to Cancer Survivor: Lost in Transition, examines the needs of cancer survivors beyond the completion of their treatment. One of the primary points in the report is the need for patients to have what the authors call a "survivorship care plan."

According to the authors, a survivorship care plan should include two major elements: a record of the patient's cancer treatment and information relevant to the patient's future care. The IOM and nonprofit survivorship groups would like survivorship care plans to become a standard part of treatment. But for now, you need to develop one yourself. It's not hard, but it does take some organization.

First, you should ask your oncologist's office for a copy of your medical records. You need to know the type of cancer you had, as well as tumor characteristics such as location, stage and grade, and if applicable, hormonal status. You should also keep a record of all diagnostic tests you had and their results, the dates you started and completed treatments, all surgeries you underwent, and any clinical trials in which you participated. It's also vital to document any toxicities or adverse reactions you experienced during your treatments.

 



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