Cancer Survivorship: Pathways to Health After Treatment: Survivor-Researcher Mentor Program

Late Effects After Cancer

“Meeting the Needs of Post-Treatment Cancer Survivors” a personal reflection by Shirley Grandahl

Advocate, Leukemia & Lymphoma Society
www.leukemia-lymphoma.org

Late effects are a fact of life for many survivors. Follow-up care and long-term medical surveillance of the increasing number of people living beyond cancer is absolutely necessary. Learning about the status of these issues in relation to the medical and scientific world, and how this applies to my own situation and to the constituents that I advocate for, was the motivation for my attendance at the conference. On a personal level, despite extensive searching, I have been unable to find doctors who treat the late effects of survivors of adult cancers. There are very few follow-up clinics in the United States and those that exist treat only survivors of childhood or adolescent cancers. As the number of cancer survivors increases, researchers are learning that cancer and its treatment can affect a survivor’s health over the course of his/her life. Some health problems are immediate, but many do not occur until many years post-treatment. These late effects are caused by the injury of cancer treatment on the healthy cells of the body, so the end of treatment does not equate to the end of needed medical care and intervention.

In my own case, following the successful completion of treatment for acute myelogenous leukemia, I fully expected to return to my former healthful lifestyle. I didn’t know anything about late effects and was not prepared for post-treatment health issues that included fatigue, immune-deficiency, cognitive difficulties, and hypothyroidism. Five years post treatment I had my first truly debilitating encounter with late effects when I was diagnosed with chemotherapy-induced dilated cardiomyopathy and congestive heart failure. Just recently, I was diagnosed with Lupus, an autoimmune disease usually diagnosed in people of a much younger age than I, and it is reasonable to assume that this is also a late effect of my cancer treatment. Survivors like me have been left to wander about in the dark, wondering what additional late effects may be waiting around the next blind corner.

It was encouraging to learn at the conference that medical oncologists, scientists, and researchers are addressing the issues of treatment-related delayed toxicity and organ damage, as well as secondary cancers, fertility problems, psycho-social issues, etc. Research is also producing safer ways to administer radiation and chemotherapy and researchers are looking into whether behavioral changes such as exercise and diet can have a positive effect on survivors’ quality of life. I was further encouraged to learn that researchers are also looking into ways to alleviate problems survivors face with health care delivery, insurance concerns, employment problems, and disability issues. One of the most functional advances to date for survivors is the IOM’s report on childhood cancer survivorship, which provides important guidelines for surveillance and follow-up care for survivors of childhood cancers. This report is to be followed soon by a long overdue report for adult cancer survivors that will hopefully provide strategies for improving awareness of late effects for both survivors and medical personnel, and offer remedies for the many issues facing people like myself.

I heard a lot of statistics at the conference. One that was used repeatedly was that there are 9.8 million cancer survivors in the United States. This was intended to be a positive number, showing that more and more people are surviving cancer. And that may well be. But because the NCI definition of a survivor is “anyone who has been diagnosed with cancer from the time of diagnosis through the balance of his or her life,” I wasn’t sure how to interpret the number. How many of the 9.8 million are sitting right at this moment in the doctor’s office being told, “You have cancer”? How many are currently undergoing treatment? How many are in hospice, the battle nearly lost? How many of those nearly 10 million people are now living cancer free, and of that number, how many live with the late effects of their successful treatments? Is the fact that the number is growing indicative of increased cancer-free survivorship, or does it indicate that increasing numbers of people are being diagnosed with cancer? For the purpose of my own research and advocacy, I use the definition of a survivor that is more along the lines of Dr. Paul Jacobsen’s definition, which, to paraphrase, is "anyone who is post-treatment with no clinical evidence of disease." I believe statistics about those survivors would present a more accurate view of the progress being made in survivorship.

As one such defined survivor, and as an advocate for other cancer survivors, I may very well have come away from the conference with more questions than I arrived with. But that is a positive, because I also came away with the feeling that there is a profound and growing interest in improving the quality of life for the ever-increasing number of cancer survivors and that the scientists, physicians, and researchers in attendance were acutely aware of the need to find the answers to the many questions confronting them.