In this interview with Suzie Siegel, a gynecologic cancer survivor and sarcoma patient advocate, we discussed non-evidence-based medical treatments sometimes pursued by patients without their oncologists’ knowledge.
—Interviewed by Bryant Furlow
Cancer Network: What are some ways that misinformation or advice about non-evidence-based interventions has touched you and the patients with whom you’ve worked as a patient advocate?
Suzie Siegel: People diagnosed with cancer get inundated with advice, including a lot on alternative medicine. One friend insisted that I try Ayurvedic medicine. After I refused repeatedly, she offered to set up and pay for an appointment. I cut ties because it was too hard to be around someone who thought I was throwing my life away.
Another friend gave me a book by Bernie Siegel, who I hope is no relation. I started reading during an extended stay on the toilet — pelvic radiation had caused diarrhea. The book suggested a cancer’s location was related to the person’s emotional and spiritual life. If I recall correctly, it told the story of a man who had been a pain in the butt who later got anal cancer. I threw the book in the trash.
I do most of my advocacy on Twitter. People pushing snake oil are rampant, and they often contact newly diagnosed patients. I wish I didn’t have to waste my time, countering them with links to reputable sources.
Cancer Network: Where do most patients with cancer encounter information about non-evidence-based treatment options, in your experience?
Suzie Siegel: Many hear from friends and family, who can put a lot of pressure on patients. But for sheer amount of misinformation, I’d go with online sellers of books and products.
Many people don’t know how to use search engines to get reliable information. Google “Gerson therapy,” for example, and the first link is an ad for a US clinic that is offering something similar. All the links on the first page promote Gerson therapy with two exceptions: The National Cancer Institute has criticism that is so academic that some people may not get it. Thankfully, Wikipedia is clearer: “The therapy is both ineffective and dangerous.”
Even when online information is correct, people may misinterpret it. For example, Lemons for Leukemia is a fundraising challenge, like pouring a bucket of ice on your head. One woman saw it on the Facebook page of her cancer center and believed doctors were encouraging patients to eat more lemons, as part of an alkaline diet.
The National Institutes of Health, cancer centers and cancer nonprofits have information on integrative and complementary medicine that some patients may use as an alternative.
For example, a cancer nonprofit recommends a book on integrative therapies. The author has written that a soup of potatoes and carrots boosted her immune system so that she didn’t need to take Neulasta (pegfilgrastim) shots during chemo. I pointed out that patients may disregard medical advice if they think they can eat soup and get the same benefit.
Like many people, she equates correlation with causation. The fact that her white-blood-cell count was OK is not proof that the soup worked. I’ve had no evidence of disease since I got a Chihuahua. I do think everyone should have a Chihuahua, but not because I think they prevent metastases.