Cancer patients get inundated with advice, but how much of it can be trusted? Patient advocate Suzie Siegel weighs in.
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.
The author says she was sent home to die after surgery, but integrative therapies helped her attain “radical remission.” Like myself and many others, she had no evidence of disease after surgery. She may believe that other therapies helped her survive, but her survival isn’t proof.
The nonprofit that touts her book and invites her to speak at conferences has a raft of oncologists on its medical advisory board. I bet none of them have read thie book. Patients may not understand that doctors listed as advisers don’t sign off on everything, if anything, that a nonprofit does.
What I’m saying is controversial because cancer volunteers are not supposed to criticize one another.
Cancer Network: Is medical misinformation an issue even on moderated online patient forums?
Suzie Siegel: Yes. Most moderators look at posts after they’ve been posted. Because they’re volunteers, you can’t expect them to see everything immediately, nor can you expect them to know everything about their cancer.
Cancer Network: Have you known of patients who decided to forgo clinician-recommended cancer treatment and opted instead to try herbal or other non-evidence-based remedies?
Suzie Siegel: Yes, but I think the most compelling example is Tim McGrath, whose story has been told widely. He was diagnosed with [a tumor] in his jaw. Instead of surgery, he chose naturopathic remedies for 18 months until he needed a tracheotomy and a feeding tube. He has been praised for his resilience as he undergoes multiple surgeries to rebuild half of his face. But I wish people would see his story as a cautionary tale.
Cancer Network: Forgoing care can be associated with worsened prognosis, of course. But, are there also risks for patients who take herbal or other non-evidence-based remedies along with chemotherapy or other prescribed cancer treatments?
Suzie Siegel: In a pretty basket, a friend who had survived cancer gave me bottles of the antioxidant coenzyme Q10 and the herb astragalus. Astragalus can cause diarrhea. CoQ10 may lower blood pressure, which is the last thing I want because my BP tends to be low-normal, and opioid pain medicine can drop it dangerously low. I’m glad I researched their side effects before taking them.
As a volunteer, I visited a woman at the cancer center where I get my care. She was getting chemo, and an RN told her that doctors didn’t know anything about nutrition, and she should go ahead and eat all the fresh fruits and vegetables she could. She also recommended a special kind of green tea, not the kind available for free in the hospital.
I thought this was inappropriate because it undermined the patient’s trust in her doctors. Plus, a diet heavy in fruits and vegetables might not be good, depending on the patient’s side effects, such as diarrhea.
I complained to the nursing supervisor. The floor nurse realized it was me and told the patient, who decided she never wanted to see me again. Not only did I feel bad, but I also was scared of retaliation from the nurse. I asked my doctors to never let me go to that wing after my own surgeries.
Some patients lose weight because they’ve been told not to eat food they once enjoyed, such as anything with sugar, or they go on a strict diet. Taking a lot of supplements also can make some people nauseated. It’s worrisome if a patient undergoing treatment loses her appetite - and a lot of weight.
Cancer Network: What do you tell patients about the risks of non-evidence-based treatments?
Suzie Siegel: I suggest they tell their doctors about these treatments, in case they may have side effects or a bad interaction with other medication they are taking. If they want more information, I may point them to reputable sites, such as Memorial Sloan-Kettering or MD Anderson Cancer Center’s section on herbal medicine.
If they are thinking of paying thousands of dollars to go to a wellness spa, I may tell them about how they can get similar treatments for less money, often at large cancer centers that offer dietary advice, massage, acupuncture, etc.
If they’ve talked to their doctor, and what they’re doing is harmless, then I’m happy if it gives them hope or relieves pain and stress. Examples include meditation, prayer, reiki, and visualization. I just don’t want them to feel pressured to do these things to survive.
I may mention that I ate organic food as a child and took supplements. My father was a self-described “health nut,” and it seemed like every week there was something new and horrible that we had to ingest. I say that with good humor because I know he meant well. I was a vegetarian when I was diagnosed with leiomyosarcoma. I’m all for a healthy diet and exercise, but please don’t tell me that broccoli is going to cure cancer.
If I’m talking to patients via a 1-on-1 peer support program, I want to give them support on whatever decisions they make. It’s not my role to tell them what to do. But if they ask me questions, such as: “Do I know anyone who got cured by taking supplements?” I answer honestly.
I’m more directive if I meet them on Twitter or Facebook.
Cancer Network: Should clinicians ask patients if they are taking herbal supplements – and how should clinicians handle questions about non-evidence-based treatments, in your opinion?
Suzie Siegel: Yes, and I hope they ask these questions in a nonjudgmental way so that patients feel they can be honest. Clinicians may want to refer patients to registered dietitians who can answer more questions.
Cancer Network: What else do you want to tell readers about misinformation’s reach among patients with cancer?
Suzie Siegel: Never underestimate how much misinformation patients get, including ways that they may misunderstand you. The more time you can spend listening to them, the more you’ll get a chance to gently correct mistaken beliefs.