A long misdiagnosis of a stomach ulcer to the reality of metastatic kidney cancer in eight frustrating months was that which compelled me to become a patient advocate. Lucky to have a real and unwelcome diagnosis despite the delay, I was lucky to have been seen by a kidney cancer expert. Post a radical nephrectomy, I eventually had the only FDA medication, then approved for RCC, and had a complete and durable recovery, more than 13 years ago.
Grateful for the help of other patients in my recovery and recognizing that there was little education for patients and/or general oncologists,I began my advocacy.
I now serve as the first renal patient advocate for a large network of oncologist who provide clinical trials, help onocology nurses understand the issues of kidney cancer patients who seek high dose interleukin treatment which saved by life, and how patients can take an active role in their own diagnosis and care.
"It doesn't have to be this way," say I and so many others. All of us can make the changes that benefit patients!