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Debra Gottsleben is the vice-chair of the Patient Advisory Board of KCCure, a non-profit organization focused on increasing research on kidney cancer and finding a cure. She herself is a patient and a patient advocate, giving voice to the ideas and opinions of patients.
Debra has recently spoken before the American Urological Association’s Annual Meeting about the work of KCCure in gathering experiences from patients that may help to inform the work of the scientists. KCCure hosts several Facebook groups for patients. Debra began a group specifically for people with benign renal masses — a mass of tissue on the kidney which turned out not to be cancer but a much less worrisome bit of tissue. As part of that work, she surveyed members about their experiences and anxieties about their medical journeys. She reported this survey at the AUA meeting.
The doctors thought that “benign” would be good news and the patient would be happy. They were surprised to hear that from Debra’s survey data a large percentage of patients had unresolved worries even after getting the diagnosis of benign. Hear the discussion among Debra, Mike Lawing, and Joyce Graff.
A few terms used in the discussion:
- renal = pertaining to the kidney
- benign = not cancer
- oncocytoma – a benign tumor of the kidney
- angiomyolipoma – a benign fatty tumor of the kidney
- sestamibi scan useful in diagnosing oncocytoma, see article from Johns Hopkins Hospital
See Debra’s bio at https://kccure.org/2018/04/debgottsleben/
Hear our previous interview with her regarding her experience with an oncocytoma: https://powerfulpatient.org/debbie-does-bethesda/
