Sunday, October 13, 2013

Redefining Cancer (and Follicular Lymphoma?)

Nice commentary from  Scott Seaman on (it's been a while since I linked to an article by him). Seaman has something to say about the recommendations made this summer by a working group from the National Cancer Institute. His article is here.

First, let me be clear: what the working group suggests is just a suggestion. There is no policy set to be implemented, by anyone, anywhere, based on this recommendation. Let's be clear about that before we go any further.

I remember seeing this report over the summer, and made note of it, but never looked into it enough to write about it. The working group suggested that many cancers that are diagnosed lead to unnecessary treatment; people hear the word "cancer" and lose their minds, demanding further tests and treatments that could have been avoided, and that do more harm than good. Prostate cancer is a fairly well-known example of this: some types are indolent, diagnosed when the patient is of advanced age, and slow-growing enough that it would be years before it would need to be treated. Patients die with the cancer, not because of it. The working group gave other examples of this, focusing on certain types of breast and skin cancer, among others.

The panel called for reserving the word "cancer" for "describing lesions with a reasonable likelihood of lethal progression if left untreated." For other growths that would not likely lead to lethal progression, they suggest the term "Indolent Lesions of Epithelial Origin" (IDLE).

Now, back to Scott Seaman's article: Seaman argues that, in the 42 years since Nixon declared "war on cancer," we've come a long way. Not as long as we'd like, but a long way, thanks, he says, to raising awareness, encouraging screening, and suggesting lifestyle changes that may prevent cancer. Yes, we may over-test. We may be too "aware" sometimes. We may have made "cancer" too scary a word.

But isn't that the whole point of "awareness"? Isn't that why I can't buy a loaf of bread this month that doesn't have a pink wrapper?

Seaman says, obviously, that taking the working group's recommendation would be a step backwards.

More importantly, it has some real implications for Follicular Lymphoma. The working group homes in on the word "indolent." If their suggestions were taken, would Follicular Lymphoma be included? Would we no longer have cancer, but Indolent Lesions of Epithelial Origin?

In some ways, that would be nice. I'd like of like to no longer be a cancer patient. I might even give up Lympho Bob.

But then you think about the implications.

If we don't have cancer, would we still get to see the oncologist? Can we see him quite as often? Do we have to wait until our Indolent Lesions of Epithelial Origin transform? Or would just being diagnosed as grade III (with or without B symptoms) be enough?

I agree with the working group that cancer can take "multiple pathways...not all of which progress to metastases and death, and include indolent disease that causes no harm during the patient's lifetime." But some, and I would include Follicular Lymphoma, take such a potentially messed up pathway that it gets hard to define just what "indolent" is, and when it starts and stops fitting that category.

I will say again that the working group hasn't influenced any kind of policy just yet, and no one is proposing that any changes definitely take place. But I do think it says something about how important it is for us to be advocates for ourselves, and to pay attention to issues like this.

And we need top remember that words matter. They influence how we see the world, and the parts of it. Think carefully about how you define yourself, and about how you want others to define you. Not just in terms of cancer policy, but in your everyday life.

Thanks, Mr. Seaman. Some great food for thought.

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