Do Not Believe Everything You Read Online about Cancer
Hester Hill Schnipper, LICSW, OSW-C
DECEMBER 10, 2018
Have you found inaccurate cancer info online?
Many of us are very dependent on Internet research and spend hours reading about our cancer situations. Some of what we can read is helpful, but all too much is scary or just plan inaccurate. My general advice is to stick with the dot.orgs, dot.govs or dot.edus—and to be skeptical of the more commercially oriented dot.coms. Of course there are exceptions. For example, lotsahelpinghands is a dot.com and also an excellent way to set up a network of helpers while you are going through treatment.
I am distressed when as an oncology social worker, I speak with someone who is convinced, in spite of all that her doctor may tell her, that something she read online is correct. Recently I met several times with a woman going through chemotherapy for ovarian cancer. She was having a particularly difficult time both physically and emotionally and was desperate for suggestions. Somewhere online she came across the idea of fasting, with the exception of water, for two days prior to and the day of chemo treatment. Honestly, this felt nuts to me and probably made her feel even worse, but she was committed to the idea. I called her oncologist to talk about it (with the patient’s permission, of course), and she said that she had tried several times to dissuade her from this practice.
More often, people come across information and testimonials about so-called treatments and cures for cancer. There are also lots of sites that are trying to sell various products to prevent cancer in the first place. The first reminder is the old one: If something seems too good to be true, it probably is. Be immediately skeptical of anything that is going to cost you money and make money for whomever is selling it. At the extreme end, this kind of information convinces some people to refuse standard evidence-based Western cancer care in favor of supplements or teas or herbs or some other concoction.
I am thinking about this because of a recent study, published in European Urology, that looked at online videos, mostly from YouTube, about prostate cancer or prostate cancer treatment. The one with the most views, more than 300,000, was pushing an injection of Chinese herbs into the prostate gland. This has no scientific basis or validity. The researchers actually noted an inverse ratio between the number of views and possible authentic value. In other words, the more often a video was viewed, the less likely it was to be accurate. I wonder whether this is because the producers of those videos spent more time on the filming than they did on the product itself.
The other point to be made about online research is to be careful with online chat rooms or other ways for individuals to communicate. When they are good, they are very good indeed and can provide the most helpful kind of support and understanding from others going through a similar situation. However, not all of these sites are monitored and may contain postings that are terrifying and inaccurate. With a smile, I remind my patients to beware of anything posted in the middle of the night.
What are your thoughts about this? Please share them in the BIDMC Cancer Community, which I am pleased to say is carefully monitored.