Monday, July 27, 2015

Not Knowing

Wow. My last post, where I commented on a letter to the editor, got a few more comments, and a whole lot more page views, than I normally get. Many thanks to Anjou and Karl from for sharing the link.

One of the things I commented on in the post was the letter writer's saying that someone at Dana Farber in Boston said the letter writer's Follicular Lymphoma was probably caused by "pollutants in the air," and I wrote that it seemed like a strange thing for someone from Dana Farber to say, since we really don't have hard evidence that air pollutants are a cause. However, someone commented on the post, saying that he or she also was told by Dana Farber that FL was caused by air pollutants or pesticides.

I've been thinking about that for two days, and I feel the need to comment. (Not just because it seems like I was wrong, and I hate being wrong, as my wife and kids will be happy to tell you.)

I don't doubt that these two patients were told that pesticides or air pollutants were the cause of their Follicular Lymphoma. I also don't doubt that they might be one of many causes of Follicular Lymphoma. But it still seems strange to me that the doctor would put that out there as the cause.

I haven't looked up the studies that I remember about pesticides being a cause of Follicular Lymphoma. I think they were from a while ago. From what I can remember, researchers looked specifically at farmers, or people who would have handled or been around pesticides a lot. And they might have also extrapolated from that, and figured that homeowners sometimes use even more pesticides than farmers, and so some percentage of Follicular Lymphoma is likely to come from pesticide use.

From what I can remember, the number certainly wasn't all Follicular Lymphoma patients, or even a majority of them. So it seems strange to me for a doctor to say that was the cause. And if it was stated as "pollutants in the air," without any other explanation, then that seems borderline irresponsible. Something that vague doesn't answer the question of "why?" and might even just cause more panic.

So why am I so annoyed by this?

I mentioned it briefly in my last post, and I've written about it before, but I'm going to give a longer explanation here, if only so I can stop thinking about it.

First of all, let me say that I am no fan of pesticides, and I'm all for reducing their use. If you have read the blog during the last few Septembers, then you've heard about my prize-winning vegetable garden. And that garden is absolutely chemical-free. No artificial pesticides, just companion planting, beneficial insects, and the occasional shot of hot pepper wax.

So I have to think my Follicular Lymphoma was not caused by excessive pesticide use. Would I like to know for sure what did cause it? Maybe -- but only if I could be sure. And I don't think that's possible.

You might remember way back in January, there were a lot of stories online about a study that found that most cancers are probably caused by random genetic mutations, rather than things like lifestyle habits. That didn't sit well with a lot of people. They would rather be able to name the thing that caused their cancer, not just bad luck.

I think that's probably even more true for Follicular Lymphoma patients, especially those of us with an indolent variety. We sit and watch and wait and wonder, never really knowing what's going to happen next, or when, or where, or how badly. There's a whole lot of Not Knowing involved. It's stressful, in a different way, I think, than other cancers are stressful. We look and feel healthy, but there's this time bomb that might go off at any time. Or maybe it won't. It's a chronic emotional disease as much as it is a chronic physical one.

So wouldn't it be nice to be able to answer one question? If not what, and when, and where, and how, then maybe why? Can you give me that, at least? Can you tell me how I got this damn disease?

Here's why I don't think it's worth asking, or answering: Because we don't know for sure, and probably can't know for sure, and there's nothing good that can come from a partial answer.

I've said it before -- as cancer patients, we have enough negative emotions to deal with. There's sadness, anger, and uncertainty, and more. If we get an answer that might true -- "It was pesticides" -- then what do we end up with? Maybe someone who spent a lifetime working in landscaping, taking care of his family, and now he has to add guilt to the list?

And that assumes that pesticides really were the cause. There's a good chance, even for the farmer, or the landscaper, or the homeowner with the really big tomatoes, that it was just bad luck.

So, for that question, I say it's better to just not know. Better to keep the focus on the present and the future, staying healthy now and learning what we can about out disease.

Because Hope can't come from look backward and dwelling on the things we can't change and the things we can't know.


Anonymous said...

Many studies are coming out that show a direct link between Roundup and NHL. Personally, I think lymphoma may be caused by many factors over time and not just one specific thing. By being aware of these things it gives me the option to change my lifestyle choices. For me, it's not so much trying to figure out how I got NLF, it's more trying to be as healthy as possible and staying in remission. If you have never seen it, check out Robert Miller's site
I enjoy reading your blog.

Anonymous said...

The issue I have with the Robert Miller site is that he had the rarer Grade 3 Follicular Lymphoma which is unrepresentative of most follicular patients who have Grade 1 or 2. Why this is relevant is that very recent research finds that some Grade 3 follicular lymphoma's are really DLBC with a follicular component and therefore like DLBC potentially curable if treated as an aggressive lymphoma with chemotherapy.

Anonymous said...

Regardless of his grade, I think it's a site worth following. He focuses more on daily lifestyle choices and how they affect cancer rather than chemotherapy treatments. The best part for me is the discussion board which has over 2500 participants.

Tom68 said...

Hi Bob an all

Greetings from Switzerland. Have FL Grad 1-2, Stage 4. Bob, you make a great job with your blog.
On this posting, I maybe have an interesing news release from a well known German oncologist, published now in July 2015.
It is a study about causes of Lymphomas and targeted Therapies. Unfortunately only in German, but will send it, in case I find some in English.
Best regards, Tom

Lymphomaniac said...

Tom, thanks very much for the link. I'm going to translate it, and try to find an English version to post.
Kathleen, I am aware of Robert Miller's site. I came across it when I was first diagnosed, but I was too cheap (it's my Scottish heritage, I think) to pay the fee to join. It seemed like there were lots of other places online with information about Follicular Lymphoma that were well-researched and run by experts in the field -- and, most importantly, free. So I've been sticking to them for the last 7.5 years.