posted by Amy on Nov 28
I belong to two online breast cancer support groups. One is a closed Facebook group for women with metastatic breast cancer, and one is a group for my particular subtype of breast cancer, for all stages. Lately I’ve been paying much less attention to both of these groups.
One consequence of being in relationships with people who have Stage IV cancer is they die. That’s certainly a down side to participating in support groups, and it’s always sad. Sometimes, as I’ve said in other posts, it just gets overwhelming. However, I really do think it’s better to have loved and lost than never to have loved, and death is part of life. Death is hard, but it’s also utterly natural. Every living thing dies eventually.
No, it’s not suffering and death that’s souring me on support groups. It’s pseudoscience.
Most of the claptrap about cancer is harmless enough, and a lot of the advice is probably good, though not usually for the bogus reason given. For example, some say “cancer loves acid” and claim you can raise your body’s pH, and that will help you. Well, the way you can supposedly do that (you can’t) is by eating lots of fresh fruits and vegetables. Almost anyone who does that will start to feel better, because fruits and vegetables are good for humans. We’re omnivores!
There’s also a lot to be said for placebo effects. There definitely is a mind/body/emotional feedback loop that affects health. Belief is a powerful thing. I have nothing against harmless supplements, potions, and nostrums, as long as they don’t prevent people from getting actual medicine for what ails them (or vaccines that will prevent disease.) Bring on the complementary therapy. If it makes you feel better, more power to you.
People with Stage IV cancer are also a special case. It’s incurable. So deciding to spurn “conventional medicine” and get “alternative” or “natural” “treatment” may do no harm at all. No one can predict the course of any particular Stage IV cancer. It may not make any difference, and people have a right to refuse treatment. Just spare me the claims that “Big Pharma” can’t do any good for anyone, or that chemo kills more people than it cures. There’s not a shred of evidence for that. Just because some automobiles are defective, or some people get hurt in car accidents, doesn’t mean we should (or can) all start using magic carpets instead.
It drives me nuts when people fail to use any critical thinking skills, or never had any. I’m not going to go into all the signs of quackery, but one major tipoff is when there is no evidence to back up a claim. Link to the darn study that supposedly proves your point, so I can read it and evaluate it myself. No link? No credibility. Also if there’ s no explanation of exactly HOW some miracle cure works (and “It’s a miracle!” is not an explanation), then it’s probably false. And so on. There’s a lot of good work by professional skeptics who debunk the bogus claims. You can easily find it if you look.
I don’t even know why it bothers me so much, but it can really piss me off. There’s so much bullshit and snake oil connected with cancer. Gullible, desperate people watch “documentaries” and buy nostrums and potions. And not only do they buy them, but they proselytize for them. Believe whatever you want about your “juice cleanses” or your chakras or your “one weird trick.” Just keep it to yourself. And if you are selling this crap, profiting from the misfortune and desperation of others, you should be mortified. Shame on you. Why can’t you make an honest living?
At least two ordinary everyday things about humans and cancer contribute to the gullibility and credulousness. One is that we humans are storytellers and meaning-makers. We constantly try to make sense of what’s going on around us, and we notice things that happen together and come to believe they somehow share some causal relationship. Sometimes that might actually be true, but the point is we place a high priority on making sense of things and trying to gain some feeling of control. This characteristic opens up multiple possibilities for misleading oneself or being misled.
Cancer is extremely complex, and can be mysterious. Spontaneous remissions occur, and, depending on what happened before then, it’s easy to think it was the kale smoothies or the Gerson therapy or whatever that made it happen. This kind of story even pops up on sites that should know better, like this BU Today article about a student whose metastatic melanoma went away. She is apparently still in remission, which is great for her, but she has gone from attributing her good fortune to “Gerson Therapy” to saying it was prayer, which brought a miracle. Maybe it did, but the switch in explanations is interesting.
That’s just it. You never get all the details. Somebody supposedly cured her own cancer with carrot juice, and her testimonial fails to mention she also had surgery and radiation. No one vets the claims. No one follows up. How do we know it’s a true story? You also never hear about all the people who used something and didn’t get well or died.
I am willing to believe that support group members who spout nonsense about mineral deficiencies that can only be detected with special tests, or who think they can “correct” those deficiencies by soaking their feet in a special substance, or who swear by certain supplements (etc., etc., etc.) mean well and are really trying to help. But I hate it. It sets my teeth on edge.
Just because a certain food or herb kills cancer in a petri dish doesn’t mean that eating the stuff will have any effect on cancer in a human body. What’s the dose? How do you get the stuff to the cancer cells? And just because two things occur at the same time does not mean you can conclude that thing one caused thing two. All you know is they occurred together. You prayed and your friend got well. You can’t go back in time, not pray, and see if he got well anyway. But you’ll probably pray all the more fervently next time. It can’t do any harm–go ahead and pray (I do). But you really don’t know if it did any good.
I just get weary. Life, especially for someone with a cancer diagnosis, is too short.
Stuff happens. It’s no one’s fault and no one can say why. Some stuff just can’t be fixed. Support groups should be for encouragement, kindness, understanding, and verifiable, evidence-based information. But, like seemingly everything else on the internet, it doesn’t seem possible to get (and give) those things without having to confront stupidity, ignorance, paranoia, and useless advice. Sometimes I just have to walk away.