BETHESDA, Md—As life after a cancer diagnosis grows longer for more patients, how these survivors live with their disease grows more important. Now, the National Cancer Institute’s Office of Cancer Communications has issued The Cancer Journey: Issues for Survivors, a training program for all health care professionals, including nurses, doctors, social workers, and therapists, to help them understand issues cancer survivors face.
“Many health care professionals are not aware of the complexity of the problems of cancer patients, which may include depression and anxiety, economic strains, and long-term consequences of therapy,” NCI director Richard D. Klausner, MD, said at a media briefing. “This program can raise awareness within the medical community that issues of cancer survivorship don’t end when therapy stops.”
The program, completed with significant support and input from Ortho-Biotech Inc. and guidance from the National Coalition of Cancer Survivorship and other cancer organizations nationwide, consists of a 30-minute video, a leader’s training manual, and a looseleaf binder with supporting cancer survivor-ship resources, said Katherine Crosson, MPH, CHES, chief, Patient Education Branch, Office of Cancer Communications, NCI. “The video is designed to be used in a workshop setting,” she said. “NCI is working with patient educators, oncology social workers, advocacy groups, and other professional organizations to plan national training programs.”
The video at the core of the program portrays a dozen cancer survivors telling how they have dealt with life in the wake of a cancer diagnosis—physically, emotionally, and financially.
Vivian Crestwell, a retired State Department employee from Forestville, Md, who appears in the video, has survived several bouts of breast cancer. “All health care workers—doctors, nurses, therapists, technicians—need to see this video,” she said after presentation of the tape at the NCI. “If they can only see cancer survivors talking, it will be a wake up call. Everybody thinks cancer patients only think about cancer, but we’ve got other things on our minds, too.”
It is these “other things,” as Ms. Crestwell put it, that The Cancer Journey addresses. For instance, patients must live with physiological changes resulting from treatment, ranging from hair loss to chronic pain to compromised bodily function. When doctors see patients for these symptoms, they must understand that patients may also have psychological and economic concerns.
Despite the Americans with Disability Act, cancer survivors may still face discrimination in the workplace and difficulty in getting work appropriate to their medical status as they recover. One man interviewed was summarily fired from his job; another lost his health insurance.
Financial Stress
Others may stay in jobs they dislike, just to maintain insurance coverage. Some may face severe financial stress when insurance companies fail to pay as expected or deny compensation for clinical trials or for treatment deemed experimental. These strains can cause patients to postpone or even avoid treatment—a good example of how nonmedical issues can affect medical care.
By confronting health care professionals with these issues, regardless of their role in the patient’s fight for survival, the Cancer Journey seeks to make care for cancer survivors more comprehensive.
“There are many professionals who deal with cancer patients who already know the message of the video,” said Anna T. Meadows, MD, director of the NCI’s Office of Cancer Survivorship. “This will allow them to familiarize others with little oncology experience such as volunteers or noncancer medical personnel. In the half hour it takes to watch this video, you get a really broad understanding of the problems facing survivors and a perspective that would otherwise take months to acquire.”
