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Cancer Survivorship: Pathways to Health After Treatment: Survivor-Researcher Mentor Program
 Late Effects After Cancer
“New Directions in Cancer: Surviving Cancer and Beyond” a personal reflection by Gina Petrak
Advocate, Patients IN the Know (PINK)
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Twenty advocates were selected to participate in the Survivor-Researcher Mentor Program, a component of the June 16-18th, 2004 Survivorship Conference, Cancer Survivorship: Pathways to Health after Treatment held in Washington D.C. The advocates were asked to write a short paper from an advocate’s perspective on the highlights of the conference. What follows is this advocate’s view of the conference.
Dr. Andrew von Eschenbach, Director of the National Cancer Institute and a prostate cancer survivor, stated that we have entered a new era in oncology. Our focus is shifting from finding a cure for cancer to living with a chronic, manageable disease. He added that it is not about eliminating cancer, rather, our focus is that no one dies or suffers as a result of cancer by the year 2015, which is only ten years from today.
Dr. von Eschenbach deserves accolades for finally acknowledging, and bringing to the forefront, the fact that cancer patients have been living a long time with survivor issues that are not being addressed. A major theme of the conference was that practical problems like discrimination in the work force, inability to obtain health and life insurance, and high medical bills are not being solved.
As stated in his remarks and addressed in his August 2003 Director’s Update, “Today, we still may not be able to "cure" cancer, but we can now implement a comprehensive strategy to preempt the onset and progression of the disease,” is Dr. von Eschenbach opening the door to the possibility that a cure for cancer is not attainable in the near future (National Cancer Institute, Director’s Update, http://www.cancer.gov/directorscorner/directorsupdate-08-27-2003)? Some advocates and their organizations feel a tension between these two perspectives, namely not focusing on curing the disease but rather eliminating suffering and death. How can we eliminate death from cancer if we can not cure the disease? Further, how can we eliminate suffering when most cancer therapies, including surgery, radiation, and chemotherapy all involve suffering?
There are many problems associated with cancer as a chronic disease, many of which are related to quality of life. Some of the major issues that were highlighted at the conference include the following:
· Half of all families that declare bankruptcy do so because of medical bills. It does not matter if the highest quality medical care is available if it is not affordable.
· Cancer fatigue is many times not relieved by rest. Many cancer patients can not live a normal life.
· Often sexual activity decreases or ceases after cancer due to a change in body image, loss of interest (libido) in sex, and in women vaginal dryness and in men, erectile dysfunction. Cancer and its therapy can disrupt family life and intimacy.
· Individuals with breast cancer on the left breast have a higher incidence of radiation induced cardiac disease. Therapy can create permanent disability.
At the end of her talk Dr. Ming Hui Chen, Brigham and Women’s Hospital and Dana Farber Cancer Institute, thanked participants of clinical trials along with her collaborators. An investigator, publicly thanking her subjects is an important step toward the recognition in the role of survivors in discovering the cure for cancer. I have participated in three clinical trials and felt that my contribution to science was not appreciated. I have also attended many conferences and do not recall any scientist thanking subjects at the end of their presentations. Kudos to Dr. Chen.
It is becoming clear that the definition of a cancer survivor must encompass more than the patients themselves. “An individual is considered a cancer survivor from the time of cancer diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.” (National Cancer Institute, Office of Cancer Survivorship, http://dccps.nci.nih.gov/ocs/definitions.html) This expansive definition of cancer survivor is extremely important. It recognizes the fact that cancer affects everyone.
My sister was diagnosed with breast cancer in 1998 at the age of 53. Her suffering was the impetus for my becoming a cancer advocate. Advocacy became my mission. However, I always felt like a second class citizen while attending conferences because I had not been diagnosed with cancer. I now feel empowered to take up the cudgel in my fight against cancer.
What I saw at the conference I have never seen before. The coming together of the Lance Armstrong Foundation, the National Cancer Institute, and the American Cancer Society heralds a new day in cancer survivorship. I feel advances were made at this conference that have never been made before. The Survivor-Researcher Mentor Program was funded by the Lance Armstrong Foundation while the conference was co-sponsored by the National Cancer Institute and the American Cancer Society. Survivors, advocates, and researchers benefited from three organizations partnering for the advancement of cancer research. I departed from Washington, D.C. inspired to work harder toward our mission with the realization that these organizations are more powerful when their forces are united.
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