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Tuesday, August 21, 2007

Confusing, complex, no one answer

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.

7 comments:

sue said...

As always your thoroughness in thinking is excellent..whenever I'm in doubt I think not only about the outcome but about the journey on the outcome and would it be worth the side effects with little or no real definition of success...more over I always refer to a little poem that was given to me and it always helps me in my thinking process....
"the path of healing is an everchanging journey with threads of faith and courage softly intertwind among the genle colors of hope" To me hope is different for everyone...I think we all tend to have a different solution to our end result. I like to know what is out there for treatment but also weigh the "journey" against the plan. doubt this makes much sense to anyone else but somehow it does me. I like knowing my options but feeling guiltfree in my decisions. Doing nothing with mm is not giving up, in my opinion. sue

Carver said...

Hi Sue,

I love the way you put it and what a great quote. I think you made perfect sense. "I like knowing my options but feeling guilt free in my decisions" captures the issue in a nut shell for me. As ever, Carver

jmb said...

Hi Carver,
This is a very good post and of interest to me because my husband had a melanoma removed from his forehead a year ago. They said they got it all and he has no further follow up for it after the initial one.
However it was six months after 8 weeks of radiation for prostate cancer and this past month he has had a large sqamous cell tumour removed from his head. In fact he has follow up by the dermatologist for his skin cancers and follow up for his prostate cancer by the radiation oncologist. He has also had a basal cell skin cancer removed too, but this seems minor in the scheme of things after all the others.
This is no doubt because of his misspent youth as a surfer in Australia.
I wish you well and am sending good vibes for the five year mark, and the ten and so on.
Regards
jmb

jmb said...

I forgot to say how beautiful your photos are and I'm amazed that you said my site made you join Photo Hunt, because I am not in the same school, let alone class.
regards
jmb

Carver said...

Hi JMB,

Thanks for your comment. I am sorry that your husband has had to deal with several different cancers. I know that must be frightening.

I assume that your husband had a fairly thin melanoma primary and that's why they said no further follow up beyond with the dermatologist was indicated. The risk for melanoma metastasizing from anything under 1 mm breslow is pretty low and they usually don't recommend the sentinel node biopsy in that case.

My breslow was at least 6.9 mm, plus 2.8 mm residual dermal melanoma, and a positive node. I was pretty lucky to only have one node involved and I had a PET/CT scan before the wide excision and SNB since there was a high risk mine had already spread to an organ, etc. Fortunately it hadn't.

I am followed so closely because of all of that.

Thanks so much for your well wishes. My best wishes to you and also to your husband.

Take care, Carver

jmb said...

Hi Carver,
I guess his melanoma was not too deep. It was there for years on his forehead and then it changed and the dermatologist decided to biopsy it. The first operation was not deep enough for the pathologist so it had to be done again to get wider margins. This required skin grafts and was a much more serious operation but there was no mitosis in the melanoma according to the path report so I guess he was lucky.
I have a Russian friend who like you (I went to read your whole story) had huge problems with the drainage from the lymph node although not the terrible after effects that you have suffered since.
Of course his wife was emailing us and we didn't get the whole story until long after when he visited Vancouver again.
I hope things are much better for you now, take care
jmb

Carver said...

Thanks JMB and I am doing better.

I'm glad your husband's melanoma didn't require any further surgery after the re-excision. I know that it must have been nerve wracking, particularly because of it's location and since he was already dealing with prostrate cancer.

Take care, Carver