The journey of one kidney cancer patient and advocate
Twenty years ago, Sarah Wise Miller spent her 47th birthday in the hospital recovering from surgery to remove her right kidney. The news—it was cancer. But the surgeon reported that he “got it all,” and said Sarah should go home and enjoy life. She embraced the news and jumped right back into life, juggling work as a marketing director for an information security consulting business with the demands of being a single mother of adolescents, with their active lives including soccer, baseball, and dance lessons. Life was good. Some years later, during a visit with childhood friends, Sarah found out one of her classmates had been diagnosed with kidney cancer as well. His kidney cancer had recurred, and he succumbed to the disease. Reality shook Sarah to her core. How could this happen? Sarah soon found out that, once kidney cancer returned, there was little to be done to stop the spread of the disease. At the time, there was only one approved treatment for metastatic disease, and that was only successful in a small percentage of patients.
The realization changed everything for Sarah. She became involved with the Kidney Cancer Association as an advocate to change the way kidney cancer was treated, as well as to educate and enlighten other kidney cancer patients about the disease. She met her husband 16 years ago, and he too was a kidney cancer patient living in blissful ignorance that the cancer could come back (his surgeon had “got it all” too). Two years into their relationship, Jack’s cancer returned, even though his primary tumor had been stage one. Together, both Sarah and Jack advocated for increased research funding for kidney cancer detection, treatment, and prevention. For 12 years, Jack fought metastatic renal cell carcinoma with Sarah by his side. One of the biggest factors contributing to his survival was the inherent hope that new therapeutics would continue to be developed, thus prolonging his life. When Jack was first diagnosed with kidney cancer metastasis, not only was there a dearth of therapeutics, but his grandchildren were yet to be born. During the time that Jack fought his disease, they adopted a rescue pup, Tesla. The pup not only was a welcome reprieve for Jack from the trials of his treatment and disease, but a companion for Sarah. Hope, companionship, and eight grandchildren contributed to his survival and their quality of life.
Sarah did not give up the battle when she lost Jack to kidney cancer. She continued forward with his memory and his hope. She participated as a consumer reviewer for the Congressionally Directed Medical Research Programs, Peer Review Cancer Research Program, and then for the newly established Kidney Cancer Research Program (KCRP). As a consumer reviewer, Sarah encountered scientists and researchers who become wrapped up in the science of a particular project, but had lost sight of the impact such research might have on the end user. Through the work of these panels, Sarah found scientists much more open to considering how their research will eventually impact the public. While Sarah believes all science has merit, when lives are being lost, Sarah prefers to see cancer research being prioritized so that patients can reap the rewards of improved outcomes. It has been Sarah’s experience that, when patients and consumers, as wells as scientists, researchers, physicians, and clinicians are all around the table, understanding and respect is quickly achieved. A win—win for all involved.
When first diagnosed with kidney cancer, Sarah’s doctor put her in touch with another kidney cancer patient. This was her first exposure to patient advocacy at work. It made a huge difference to how she approached her surgery. In the years since, Sarah has tried to repay that patient’s kindness by making herself available to others in the same situation. It is why Sarah volunteers time to organizations on the front lines of kidney cancer, and it is why she believes that participation in the KCRP peer review process is not only important, but rewarding.
Last updated Tuesday, July 31, 2018