Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
Late Effects After Cancer
“Awareness, Progress and Hope” a personal reflection by Sally de Lipkau
Cancer Information Representative, Washoe Medical Center
Learning about the risks of secondary cancers, cognitive and memory problems, and psychosocial and family issues was significant. Knowing that my last cancer diagnosis 3 years ago may be a late effect of previous cancers that occurred 15 and 20 years earlier, was both disturbing and somewhat relieving for me; we wonder, "Why?" and "What can I do to prevent this from happening again?" It is gratifying to know that researchers are interested in these issues and working to find answers, or at least ways to assist those experiencing secondary cancers. To have the additional problems (cognitive, memory, depression, psychosocial, and physical) recognized and validated is so helpful when dealing with those who are troubled and think they are alone after their cancer experiences.
I was especially impacted by some of the suggestions brought about by the studies. Of special interest to me was that a surveillance program needs to be in place after cancer treatment. Three years ago my diagnosis of pancreatic cancer with metastasis to both ovaries resulted in surgery, a year-long clinical trial protocol of chemotherapy, and two additional surgeries—the final Whipple procedure which changed the diagnosis from pancreatic cancer to duodenal adenocarcinoma. The only follow up I was given was a follow up appointment, one year later, with the surgeon who said, "You’re doing great. Send me a card once in awhile!" My local oncologist where my chemo was administered told me to give him a call "if something comes up." Gaining the knowledge from the information at the conference that I should have a surveillance plan has given me the motivation to call my oncologist and discuss some type of structured follow-up schedule. I have also shared this with members of the cancer support group that I facilitate.
Changing the focus from finding cures (although this is still critically important) to assisting survivors on how to live with cancer and possible late effects can be difficult to sell. Survivors want to go through their therapies and put the cancer behind them; then, when they experience a recurrence or emotional issues that occur, they are devastated and often find themselves unable to cope with facing treatment again. Comparing cancer to a chronic disease can be difficult for some, but seems to be going in the direction of "acceptance" for many as the numbers of long-term survivors grow. For me, having worked with survivors as a volunteer for the American Cancer Society for 23 years and at my job for 12 years, I know that these experiences helped me deal with new diagnoses. For example, I cope with some cognitive "chemo-brain" problems and try to share these experiences with my constituents in order to help them cope, as well. I feel that support groups and one-on-one volunteer survivors are imperative to enhancing quality of life for survivors.
As some presenters expressed, getting survivors back into society—work, social activities, etc.—can be challenging. So many of the survivors I interact with feel isolated and confused about what direction they should go, especially if they are not ready to return to work or are retired. My plan is to institute a survivor volunteer program and train these survivors to "buddy" with newly diagnosed and/or recurrence patients and provide them with the benefit of their experience, which I know from my own situation helps the giver as much as the receiver. One of the poster session presenters at the conference offered me her assistance, since she has such a program in place at her workplace which will be invaluable to me in my pursuit. My hospital has already approved the plan!
I believe that being AWARE without being overly ALARMED about the late effects of cancer and its treatment is the message I want to promote. Also the enormous amount of research, study, and focus the NCI, OCS, ACS, and LAF as well as all the research institutions are placing on the issues of survivorship are most encouraging and can truly enhance quality of life for cancer survivors.