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National Cancer Institute

National Priorities in Cancer Survivorship

“Access and Data for All--No More Surprises, Please!” a personal reflection by Rebecca Morris

Advocate, Virginia Breast Cancer Foundation

As a breast cancer advocate, my experience at the Pathways to Health After Treatment: Cancer Survivorship Conference was both extremely informative and motivating. Since my breast cancer diagnosis in 1995, my focus has been on education and legislative advocacy for women, men, and their families affected by breast cancer. The word "survivorship" was not particularly a part of my vocabulary, as I do not easily embrace the term, feeling that it implies we have control over our health after diagnosis; it ignores those that have died from the disease, and one cannot survive a battle that has not been officially won, either personally or as a disease type.

As a result of the conference, I more clearly understand the need for continued research into the late effects of cancer treatment. I was surprised to learn that extensive research was already underway. The National Cancer Institute, the Centers for Disease Control, the Lance Armstrong Foundation, the President’s Cancer Report, the Institute of Medicine, and the American Cancer Society all have engaged in meaningful dialogue and research and have issued recommendations on the issues facing the 9.8 million cancer "survivors" in the United States. By 2015, the challenge goal proposed by NCI is that no one will suffer or die from cancer. If we are to achieve this goal, the recurring theme, which captured my attention throughout the conference, pointed to two critical national needs.

First, quality healthcare for all is essential, but without access to care, we cannot even begin to create a future where no one dies from cancer. In the President’s Cancer Panel report, the first “immediate action step listed (was to) “provide immediate coverage for the uninsured (84 percent of whom are workers and their dependents) upon a diagnosis of cancer to help ensure that no person with this disease goes untreated.” In Voices of a Broken System—Real People, Real Problems, published by the President’s Cancer Panel members, Dr. Harold P. Freeman, Chair; Fran Visco, NBCC; Dr. Maureen O. Wilson; and Dr. Dennis J. Slamon, UCLA; the moving and candid voices of cancer patients across the country detail the many aspects in the failure of our health care delivery system.

Second, without information and research on the late effects of cancer treatment, many patients WILL continue to suffer. After treatment is completed what are one’s reasonable lifetime risks of recurrent disease or developing one or more chronic or late effects? Where are the standards for oncologists or primary care physicians to guide their patients? Surveillance is desperately needed. Late effects are not expressly explained to the patient, nor are the late effects reported back so that perhaps treatment modifications could be made for future patients and intervention research could be planned.

Living with the fear of recurrence is part of every "survivor’s" journey. But access to information is essential to reduce anxiety. Documents to be used for surveillance discussion between a patient and doctor need to be developed and distributed. A national program, possibly modeled after Canada’s Passport to Health program, compiling one’s medical records into a portable form, would ensure that all historical medical information is at hand, no matter where one lives.

One researcher at the conference proposed that late effects information would possibly create “cancer cripples”. I contend that as informed patients and advocates, we would feel self-empowered, be more willing and determined to adjust our lifestyle in areas of known prevention if given current information and we would understand our “discharge” life-plan once our initial treatment is completed. Our doctors need to be trained in "survivor" issues and we need not sit on the sidelines and wait for something to happen. More information needs to be centrally collected and published on post-treatment and late effects in both psychosocial needs and physical impairment late effects, employment, insurance and financial concerns. While an endpoint to cancer is assumed by our family and friends, rarely does it conclude in the "survivor’s" mind. We experience a continuum of care, and we are not told that our risk of late effects increases with time after treatment is completed.

Dr. Julia Rowland, director of the Office of Cancer Survivorship, NCI, noted that there were many areas of “crossover” between the IOM, CDC and President’s Cancer Panel reports on "survivor" issues and that NCI will be compiling a grid of all issues, determining who is responsible for carrying out the program’s initiatives and who the partners will be. My hope is that in addition to the research needed, immediate collection and dissemination of information to cancer ‘survivors’ will be a top priority.

Many of our programs at the Virginia Breast Cancer Foundation and the Women’s Cancer Advocacy Network are focused on late effects of cancer. My goal is to be involved in planning a physician’s conference on this topic in Virginia to raise awareness for oncologists, primary care physicians and patients on the need for open communication with the patient population and the reporting of late-term effects of cancer treatment. The surprise of late effects of cancer treatment need not be another step in a cancer "survivor’s" journey.

Educate. Advocate. Eradicate.

The views and opinions expressed do not necessarily state or reflect those of the United States Government and they may not be used for advertising or product endorsement purposes.