I recently read several medblogger short pieces on CAM (complementary and alternative medicine). The danger of making the patient feel responsible for the progression of their disease came up as a side piece but was referenced back to the CAM disscussion. Personally I don't think it's useful to talk about CAM as one big animal, any more than I think it's useful to talk about conventional medicine as one big animal. Individuals are helped by digits from both animals and not helped by digits from both animals. I think it's necessary to discuss specific treatments and diseases to have a meaningful discussion. For both animals it's possible to pull off a finger and say, look, that hasn't held up under clinical trials as being helpful, why do people keep saying it is helpful. I think the part of the discussion I found the most interesting was the suggestion that part of the downside of CAM was making the patient feel like it was their fault if their disease progressed (for example, positive thinking back firing if the disease progressed and the patient ends up thinking it's their fault). I agree that is bad but I think that the same thing can happen with conventional medicine (the patient feeling like it's their fault) and that's what I want to discuss. It's odd that this subject pushed my buttons. I have considered going to an integrative medicine clinic at the university where I go for melanoma follow-up but I haven't done it yet. My doctor has never tried to pressure me into treatments I didn't want to do. However, I know people that were pressured into a treatment they didn't want to do initially. The specific treatment that I'm think of is interferon as an adjuvant treatment for stage III melanoma. Some of these people say, I didn't want to give up, in explanation of why they did the treatment. They have every reason for saying that because their doctor made them feel like not doing the treatment was giving up. Since, in some cases, my prognosis as a melanoma patient is as bad or worse than their prognosis is, I find these statements troubling. The last thing I have ever done is give up.One of the problems with high risk melanoma is that after surgery (assuming any involvement can be surgically removed), the options are fairly limited for an adjuvant treatment. Melanoma is resistant to many of the chemo and radiation treatments which have been somewhat effective in treating some of the other cancers. There is research being done into new chemo, radiation, biologic and bio-chemo treatments for melanoma but the options continue to be limited. The only FDA approved adjuvant treatment for stage III melanoma is interferon. The side effects can be grueling and the benefits continue to be debated. If a patient wants to educate themselves there is a lot of confusing literature to read.
A patient could read, Pros and Cons of Adjuvant Interferon in the Treatment of Melanoma; then a somewhat less than enthusiastic discussion called Helping Patients Decide Whether to Choose Adjuvant High Dose Interferon; and then the doctors who didn't like that wrote, Response to "Helping Melanoma Patients Decide Whether to Choose Adjuvant High Dose Interferon". Let me just say, it is very confusing and hard to know what to do. What it boils down to is that people like me can have a (1) lymph node dissection, (2) do interferon, (3) try to get into a clinical trial, do (1) and (2), or (1) and (3), or (1) and observation, or in some cases opt out of the LND and do an adjuvant, or do none of the above.What I did was after my SNB was positive, I had the groin lymph node dissection but I chose not to do interferon. I didn't consider clinical trials until I was too far out from surgery to get into one. Let me just say, that was NOT doing nothing. I've whined enough about the aftermath of my surgery. There is some debate about the LND and until recently no long term studies showed that it improved prognosis, although there have recently been some studies showing that a LND may improve prognosis. In the past, based on what was know at the time, the LND was more for staging. In a case like mine it's even murkier because a primary as thick as mine was, has a high risk of turning up beyond the lymph nodes. I don't have any regrets about my choices and I also have the utmost respect for people that have gone through the grueling interferon year.What I object to is the idea that choosing not to do the interferon year, or a clinical trial, is equivalent to giving up or doing nothing. I wouldn't mind so much if this attitude was coming from the patients. Heck, in my opinion, if you deal with the crappy treatments, I can handle a bit of attitude. What bothers me is that this attitude, of which I speak, is often in the form of quoting doctors. In my opinion a doctor shouldn't pressure a patient into a treatment which at best is helpful to a small percentage of patients. That's one thing I'm grateful for about my doctor, he was neutral about interferon. If he hadn't been neutral, it wouldn't have changed my mind but it would have put additional stress on me. Sure, the doctor can give their opinion and if they aren't neutral, I think they should say so, and say why. However, I don't think it's fine to bully a patient and make them feel like not doing a treatment with questionable benefits is a weakness on their part. The good news is many stage III melanoma patients won't recur after surgery whether or not they do an adjuvant treatment. In my case, I had slightly less that 50/50 odds (as much because of the deep primary as the positive node) of surviving 5 years. However, for me the good news is that now I have made to past 2 years, my odds will keep improving.