The Lymphoma Research Foundation has a nice page called "Focus on Follicular Lymphoma" that gives some basic information on our disease, links to LRF resources, and the occasional profile of a patient or survivor. One of those profiles popped up yesterday, and while it is inspiring (the patient, Morrie, is an 18 year survivor), it also brings up some issues that are worth discussing.
Morrie was 44 when he was diagnosed, a father of two, and was recommended to watch and wait. So Morrie and I have a lot in common; I was in my 40's, a father of three, and watched and waited for two years.
I appreciate his desire to do something -- anything. For him, being proactive meant making changes to his lifestyle that he hoped would help. And they seemed to work. His macrobiotic diet coincided with clean scan, and his return to an earlier diet (including meat and dairy) coincided with a return of the disease. He went back to the macrbiotic diet and has been cancer free since, with no chemo or radiation.
I think it's worth pointing out that the implication isn't truth. I was careful to say his diet change "coincided" with changes in his disease, but really, there's no hard evidence that diet will cure Follicular Lymphoma. It's a wacky disease, one that waxes and wanes on its own, with nodes getting bigger, but then sometimes getting smaller as well. And the whole notion of spontaneous regression is not unheard of. That is, sometimes Follicular Lymphoma just goes away on its own. Like I said, it's a wacky disease.
Is there a chance that the macrobiotic diet cured Morrie? Sure, there's a chance. Is there a chance that his disease would have behaved as it did even if he didn't eat what he ate? Absolutely. The point is, we really don't know. And it surprises me a little that the Lymphoma Research Foundation would post his story, given their focus on scientific research (their Follicular Lymphoma treatment options page doesn't mention anything about macrobiotics or other alternative treatments).
In a way, we're fortunate to have an indolent cancer (I know, I know, but hear me out -- I'm not saying it's "the good kind.") What I mean is, something slow-growing allows us the time to make the kind of lifestyle changes that Morrie made. As he says, some of the things he has done may not have helped, but they didn't hurt. that's not the case with some other, more aggressive cancers, where rejecting something like chemotherapy for a "natural" cure might result in dying. But, again, the flip side of that is that there's no way to know if whatever untested methods you are trying are actually working.
So, in the end, what I'm saying is, please fully understand what you're getting into with the choices you make. The internet is a wonderful place, full of all kinds of fantastic information. And full of lots of stuff that sound good, but isn't. As Follicular Lymphoma patients, we are fortunate to have more time than most cancer patients to investigate both.
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2 comments:
Nicely said, Bob. As you point out, a lot of difference between coincidence and cause/effect. But also, a lot to be said for feeling like you're doing something .
Michael, agreed. Sometimes something is better than nothing, which is of course the toughest part about watching and waiting. And a healthy diet is almost always a good idea, whether it cured cancer or not. My concern, though, is with people who try an unproven substitute for thoroughly tested, science-based treatments. My understanding is that Steve Jobs would have had a better chance with conventional treatments. It hurts me to see something like that happen. Less of a chance with Follicular, as long as it stays slow-growing, but the implication of the article bothered me.
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