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Are you an Advocate for Kidney Cancer Research?

Kidney cancer advocacy

My husband Gary didn’t plan to be a cancer patient. He just became one, and it completely changed our lives. And I didn’t plan to be a kidney cancer advocate—advocacy found me like a stray cat finds its new owner. One day, there was just no turning back.

In 2007, I had worked 15 years in radiation oncology, but it’s no exaggeration to say I knew almost nothing about kidney cancer. I could have written what I knew on a 3×5 notecard: “Kidney Cancer doesn’t respond to chemotherapy or radiation, and these patients do very poorly.”

But when Gary was diagnosed, I started reading everything about kidney cancer that I could get my hands on. Soon I knew who the best doctors were, what the new drugs were, that some patients did better than others. In addition to my new knowledge, I also had to learn “to advocate.”

Those first weeks after that diagnosis, I had no idea that I would be an advocate, but I spoke up for Gary, who was too overwhelmed to speak as an advocate for himself. I asked for IMRT for his bone metastasis in his jaw to spare his salivary glands and burn less of his mouth. I asked for a second opinion surgeon. I asked for an earlier surgery date. I even asked the kidney cancer surgeon to arrange a simultaneous gallbladder removal and nephrectomy. The doctors said “yes” to every one of these requests. I’m sure it’s not because I made a compelling case for the need, but more because I asked for something reasonable and then looked at them with an unwavering watery gaze until they spoke. In those first few weeks, I found the voice of an advocate, and it grew stronger each time I used it.

Over the next 7 years, my role in advocacy grew to helping others with kidney cancer find good treatment. I began to use patient forums, like Smart Patients, and there I met Robin Martinez. She’d lost her husband to kidney cancer but continued as a forum moderator helping other patients. Her support skills and knowledge of the practicalities of care often meshed well with my knowledge of the practicalities of the clinic.

We taught other caregivers how to prepare for visits and word their concerns to their doctors. We shared resources on kidney cancer and philosophies on how to get through the day with other patients. I learned during that time that every patient and caregiver has to find a coping mechanism. It may be exercise or crying, even denial. Like Robin, I found that being useful and helping others was my coping mechanism. The knowledge we accumulated helping our own husbands seemed like too valuable a resource to waste.

Then in 2012, after 5 years of grinding treatment for kidney cancer, Gary and I had a gift. Not a cure for Gary but a 3-year period of no kidney cancer treatment. Gary felt good, and it was a time we could put on blinders and live like cancer never happened to us. We travelled. We returned to work, and we began to have a sense of future again. By then advocacy was a part of me and part of how I used this freedom from treatment was to further my role as an advocate, networking with other kidney cancer advocates, including launching KCCure with my fellow board members.

KCCure’s launch has been astonishingly successful. With your help, we raised $110,000 in July. I compare it to watching the installation of a foundation to a building. The most exciting part of watching has been imagining what comes next. We need many advocates to jump into this mission with us, to fill the funding gap that exists for kidney cancer research. We need other advocates who can help us spread the word that kidney cancer needs equitable funding.

If you find yourself coming back to KCCure, you too have advocacy growing in your heart. Join us. Tell patients and doctors, friends and family, and ask them to come to KCCure. You’re a part of this, and together, we will raise the research funding we all need to develop new treatments and find a cure.

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Susan Poteat is the KCCure Secretary. She has worked in cancer care since 1989 in the field of medical radiation physics and has been a prolific leader in kidney cancer forums, offering information on current research, clinical trials, imaging and radiation therapy.

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