Gary Poteat has served as a consumer advocate for the Kidney Cancer Research Program (KCRP) since 2016, after stepping in for his wife, Susan.
In late 2007, after recently starting a business with my wife to provide temporary medical physics support to radiation oncology centers around the country, I sought dental care for what I assumed was a minor dental infection. It turned out to be a bone metastasis in my jaw. A CT scan revealed another tumor in my pelvis, too many in my lungs to count, and a baseball-sized tumor on my left kidney. I reviewed the CT scan with an oncologist (while taking a break from reviewing my patients’ charts) and it was obvious that my disease was extremely serious. I have been involved in treating hundreds of patients with Stage IV cancer and I believed my situation was hopeless. In a single moment, I had gone from a successful medical professional with a business and a plan for the future, to a patient with terminal cancer, in constant pain and facing a very frightening existence.
My first challenge was committing to seeking out aggressive treatment, despite the advice of my oncologist and the known data for Stage IV kidney cancer patient outcomes. A much more difficult challenge was finding a way to build a life from the shattered remnants of what we had thought the future would be. A cancer center counselor said to me, “Cancer takes away your old life but gives you a new, very different one.” The key, as I see it, is to accept the circumstances and rules of this new way of living and try to make the most of the time you have. Later this year, I will celebrate the 12th anniversary of my diagnosis, and while these years have not been easy, they have been years of accomplishment, love, and happiness to go along with the uncertainty, pain, and disappointments that are inevitable when living with a terrible, often terminal, illness. For most patients, Stage IV kidney cancer as a chronic disease is the best we can hope for, and is something I am very grateful to have experienced.
As in so many aspects of my life, I have come to kidney cancer advocacy following the inspiring example of my wife. She was a founding director for a kidney cancer advocacy organization and now serves as the Medical Science Liaison for the Kidney Cancer Coalition. My introduction to advocacy came in assisting my wife in any way possible with her work, and I have found my own role by focusing on educating patients on the benefits of traveling to “centers of excellence” for consultation and specialty care and reminding them of the crucial role they play in the development of improved treatments by participating in clinical trials. I also offer my time and technical knowledge to assist a kidney cancer advocacy group in administrative tasks and recently participated in a successful fundraiser for an organization dedicated to funding new research and clinical trials.
Being a consumer reviewer for the KCRP is, I feel, one of the most important contributions that I can make in the effort to improve the understanding and treatment of kidney cancer. I can offer not only my experiences as a Stage IV patient for over a decade but also my understanding of the wider kidney cancer community gained by talking with many other patients. I have learned during my service with the KCRP and talking with prominent researchers is that we are on the threshold of an era when the research done to better understand and treat kidney cancer will lead to greatly improved outcomes for kidney cancer patients. This is very hopeful for the roughly 15,000 Stage IV kidney cancer patients diagnosed each year. Since my diagnosis, the median survival and 5-year survival rates of these patients have both doubled, representing significant advances we should all celebrate. However, the fact that kidney cancer still kills roughly two people in the U.S. every hour shows how important additional research, such as that funded by the KCRP, still is.
Although I may not live to see it, I am confident that very soon, newly diagnosed kidney cancer patients will be reassured by their doctors that the vast majority of patients, including those that are Stage IV at diagnosis, can expect to have many years of a good quality of life and many can expect to be cured of their cancer. The KCRP plays an essential role in bringing about the better future I envision by helping to fund the research that has already changed the grim prognosis I faced in 2007 and will bring about even greater improvements for future patients.
Last updated Wednesday, March 27, 2019