Peggy Zuckerman
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About

Diagnosed with Stage IV renal cell carcinoma, after a long misdiagnosis, I was fortunate to receive a radical nephrectomy and high dose interleukin, the only FDA-approved treatment at that time. My goal was to live long enough to see my youngest graduate from HS the following spring. That was sixteen years ago.

After my return to health, with a complete and durable remission, I began to realize that luck had played a huge role in my recovery, and ignorance of the disease, its symptoms, and treatment options had nearly cost me my life. Recognizing that my own recovery was rare, I began to seek out any education about kidney cancer, and within a month, I attended my first patient meeting at the City of Hope in greater Los Angeles.

The highlight of the meeting was a lecture by a respected researcher about the current work in the field. When she left the room, one patient turned to the others and asked, "Did anyone understand any of that?". No one really had understood much of it, and we were all stunned. We had come for information, and would leave bewildered.

From there, a small patient support group was formed, to share what knowledge and resources we could find. Within two months, I realized that I could have given that lecture in the language of the patient, and with that, extended their knowledge and ability to talk with their own doctors. I soon found other patients online, as well as abstracts of medical articles, and some patient materials, all grim in tone and sparse in useful information.

I am now considered to be an 'expert patient' as to renal cell carcinoma, am the first renal cancer patient research advocate at SWOG Cancer Research Network, have gathered a large, sharable library of kidney cancer topics, and have written thousands of public/private emails to share the information needed by patients and doctors alike. I have become a peer reviewer of grant proposals for the Congressionally Directed Medical Research Program, mentor to other peer reviewers, and have served on the ethics board of a large pharma company and health care care company. I have spoken in conferences about clinical trial design issues, high dose interleukin, and misdiagnosis issues, served as patient faculty in CME courses, always with the patient perspective and responsibility.

I hold a certificate in Patient Advocacy from UCLA, a four-quarter course, and was honored at our graduation. My earlier education was in German, elementary education and early childhood development. Supplementing my education in the medical world, I attend webinars and educational conferences in immune therapy and renal cancer.

Reviewer Keywords
high dose interleukin immune therapy kidney cancer misdiagnosis patient-centered care renal cell carcinoma
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My Professional Societies

SWOG
Society to Improve Diagnosis in Medicine
Soceity for Participatory Medicine