Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
National Priorities in Cancer Survivorship
“National Priorities in Cancer Survivorship” a personal reflection by Sandra Batte
Advocate, Cancer & Leukemia Group B
The overall theme assigned to this section of the conference,” Shepherding the Future” was designed to give attendees an overview of the national priorities in cancer survivorship, and the speakers aptly attained that goal. One cannot move in the world of cancer research among other advocates without hearing the anecdotal stories of cognitive dysfunction, concrete physical side effects of treatments like fatigue, and other long-term health issues caused by treatment. I was aware of the National Cancer Institute’s Office of Cancer Survivorship and its focus on issues surrounding survivorship, but if this conference opened my eyes to the truly unique and poorly understood needs of survivors, then this overview on priorities gave me an understanding that there is a national resolve to address them.
The three reports reviewed in this session are each comprehensive, well prepared studies and our speakers gave us an energetic overview of each. Listening with the ear of an advocate, I was focused on what might stand out to a cross-section of survivors and would like to share those impressions from that viewpoint.
Living Beyond Cancer: Finding a New Balance, presented by Dr. LaSalle D. Leffall, was an overview of the 2003 annual report of the President’s Cancer Panel, of which Dr. Leffall is a member. The most reassuring news from this report was that the panel traveled across the country conducting a series of meetings to both listen and hear what challenges survivors faced in their everyday lives. I believe using that methodology will give survivors ownership of this information. Two of the recommendations I highlighted form the presentation are: “Every patient should be given a record of all care received and important disease characteristics,” including the names of drugs administered, how much radiation was received and what kind of machine was used. What a simple, easily accomplished concept! The second, that was strongly suggested in hearings of all age groups, is that the “Department of Health and Human Services should establish a consortium to develop standards for creating a nationwide electronic health records system.” I found it interesting that the perception of the good that might be accomplished by such a system would outweigh the fears many people have of a breach of confidentiality. We were shown a video presentation of an overview of the testimony of survivors and I felt it was well done and would prove a useful tool in educating both the public and survivors about the report.
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Summary of the Institute of Medicine Reports on Cancer Survivorship was presented by Susan Weiner, Ph.D. The major theme of this report is to improve the quality of care at the time of treatment with an eye toward possible long term side-effects. The report focused on implications of treatment for childhood cancers, which has led the way in many issues of long-term survivorship and highlights a startlingly statistic:
Two-thirds of all children treated for cancer have one late onset side effect and one-fourth have a life threatening effect. These can be caused by cytotoxic agents, surgery and/or radiation and may emerge anywhere from 6 months to many years later. Recommendations that came to the forefront included these: Simply having guidelines for follow-up care is a first priority, and this report found that they simply do not exist. Additionally, it is imperative that survivors be made aware of late effects of treatments by their treating physician, but professional training is also needed to help other health care providers and teachers be aware of and identify possible late effects.
State of Cancer Control Plans and Cancer Survivorship was presented by Susan True, M.Ed., and highlighted a report from the Centers for Disease Control and Prevention titled, “A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.” This report looked at survivorship as a public health issue and asked the interesting question, “Where does survivorship fit into comprehensive approaches to cancer control?” It strongly suggests that we should be looking at outcome evaluations, not just numbers, and prompts us to see survivorship as part of a more circular model of cancer control. In other words, if a traditional look at survivorship is linear, beginning with prevention and ending with palliation, a better approach might be to make it more circular. If there is prevention and screening and then diagnosis and treatment, shouldn’t it be followed by survivorship education that might include family history, genetic testing or counseling, and education on lifestyle changes that would bring us full circle to prevention! I was very impressed with this way of thinking; it may be a way for survivors to take ownership of their future, something they often feel they have surrendered to their disease.