Peggy Zuckerman, a brave, compassionate woman, is a Kidney Cancer Patient Advocate. In 2003, she was misdiagnosed for 8 months with severe anemia due to a stomach ulcer, which was non-existent. When Peggy sought a new doctor at Mayo Clinic in Rochester, she was diagnosed with clear cell kidney cancer (renal cell carcinoma). She initially expected her cancer to be pea size, but she was shocked to find out a 10 cm (4”) tumor and metastasis in her lungs. It was painful for her to accept the situation; she questioned “why me?”, “What did I do to get cancer?”, but Peggy could not die when her youngest son was a junior in high school at that time.
Her fear was alleviated when her new surgeon reassured, “There is a plan.” Also, when she put out an SOS, a member of Smart Patients comforted her: he left his phone number, home address, and the message, “Talk to me anytime you need to.” Peggy remarks that “he was a wonderful example of reaching out and offering help.
Although there were supportive people, receiving treatment by a high dose of interleukin(HD IL2), which was thought to give a Complete Response for only 7% of patients, was scary. Meeting doctors, who distrust HD IL2 due to statistics, disappointed her. She was angrier when the doctors did not provide any information about excellent responders. However, thankfully, she was a complete responder.
Peggy felt guilty for doing so well and wanted to help those in similar situations. Also, as a former school teacher, Peggy “set[s] a good example.” She started to be an active advocate for kidney cancer patients and joined communities such as Smart Patients. She shows that we “are supposed to educate, help, and do what you can do for others.”
She also believes it is crucial for patients to understand the information related to their illness and treatments. Thus, she sends out 10-12 articles to patients so they can share them with doctors for discussion. Peggy has about 2500 articles in her computer library.
Peggy understands that not everyone has the ability to read medical articles. She shares useful tips: “only read the abstract, introduction, and discussion, but skip methods.” “Then, write down all the questions” to clarify understanding. She offers help to go over articles. The way she remained positive during her medical journey was to have control of information. When she was extremely sick, she used a “gratitude prayer.”
“Do you have visions for the future of healthcare? Or, are there any changes you would like to see?”, I asked.
“I would want every patient to have every record… and doctors to add patient-friendly notes about what treatments they got.”
She also mentions that articles written in patient-friendly language can also help. Peggy once again stresses the importance of giving information and helping patients understand it.
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