Friday, July 24, 2015

Understanding Our Cancer

I came across a letter online today that had been written to the editor of a newspaper. I'm not going to mention the newspaper, the letter writer, or some other key details, because they don't matter. What does matter is the way the letter writer wrote about follicular lymphoma, which was not good. You don't have to read too much of this blog to know that I think it's important to stay informed, and to be accurate about the information we make public.

The letter was, in the end, not about cancer, but rather about a candidate who wants to be president of the United States. This candidate listened to the letter writer's story about cancer, which the letter writer appreciated. I'm not going to mention the candidate's name.

Here's how the letter begins:

When I was first diagnosed with lymphoma cancer in August of 2014, I was shocked and afraid. I didn’t want to believe it. I started treatment with the Dana Farber Cancer Institute in Boston that November, and they determined that surgery was necessary to find out just what type of cancer it was.

So far, so good. I'm pleased that the writer found Dana Farber, one of the top cancer hospitals in the country, and the folks who will receive money for research from next weekend's Pan Mass Challenge. I think the phrase "surgery was necessary to find out just what type of cancer it was" probably means a biopsy. I know I had to have a node removed in outpatient surgery to figure out what was going on with me.

The letter continues:

When the report came back, they found out that I had follicular lymphoma, a rare disease they believe to be caused by pollutants in the air.

 OK, here's where I start to have a problem. First of all, I'm not sure I'd call follicular lymphoma "rare," given how many people are diagnosed with it each year (30-40,000 in the United States alone, the second most common type of NHL). The last part of that sentence is what really bothers me, though: "they believe to be caused by pollutants in the air."

Really? I have to say that I have never seen anyone, anywhere say say for sure what causes Follicular Lymphoma -- and I can't believe doctors at Dana Farber would throw that one out there. Now, I have seen a bunch of speculation about what the cause might be, and there was a study that said maybe some people who worked with certain chemicals or pesticides might have had a higher incidence. But nothing definitive.

I have two problems with the "pollutants in the air" statement.

First, it seems like something like that could cause widespread panic -- you can't even go outside and breathe without getting cancer. Second, though, for people who already have FL, it just causes unnecessary worrying and potential guilt. When did I breathe bad air? Should I move away from where I live? If I stay, am I dooming my family to cancer, too? The fact is, we don't know what causes Follicular Lymphoma. As a patient myself, I completely understand those "How did I get it?" questions. But at some point, when there are no answers, it doesn't make sense to ask anymore. It doesn't lead to anything good.

The letter goes on:

The only known treatment uses the body’s genetic code to fight the cancerous cells, but the method has been waiting for FDA approval for over three years. When approved, these types of treatments will help millions of Americans suffering from cancer without the need for chemotherapy and radiation.

OK, this is just silly. "The only known treatment" is one that isn't available yet? I don't think I need to spend too much time on this statement (even though it's the worst of the bunch). You all know that there are lots of treatments available to us. There are some in the pipeline that do "use the body's genetic code" -- mapping the human genome has been a wonder in helping us understand the way cancer works. Not sure which of these the letter writer is talking about, but apparently it has been "waiting for FDA approval for over three years."

And there's another problem. There's a kind of criticism here of the FDA that I think is unfair. It's their job to make sure a treatment is worthwhile before it gets approved -- that it will improve on other treatments that do the same thing, or that it will do something new, or that it will have fewer side effects, or that it will be cheaper. As much as I would love for treatments to move along more quickly, I also recognize that they need to be proven first.

And, of course, the FDA has found ways in the last few years to speed up approval of certain treatments, if early trial results show the treatment works and is safe.

The letter then goes on to describe the writer's encounter with the particular presidential candidate, and how the candidate listened, and would fight for cancer patients.

I would be thrilled to hear all of the presidential candidates (and my goodness, there are a lot of them) say that they will fight for cancer patients, by supporting the FDA in its accelerated approval process and increasing funding for cancer research. I look forward to all kinds of statements from them on that front.

I'm not sure what to make of this letter writer. Maybe just misinformed? Maybe just hearing what he wants to hear (that FL is rare, that maybe some exposure to a chemical was one possible cause, that there is a great potential treatment out there that is still in the approval process) and took all of those possibilities as fact. Or maybe the letter writer presented Follicular Lymphoma in a way that made it scarier, to make his preferred presidential candidate look better for being a good listener?

I don't know.

But I do believe that any time we describe out cancer, we need to be accurate, especially if that description appears online. Too many people are looking for answers online, and stumbling across bad information just makes a difficult situation even worse.

The lesson for readers is this -- be aware of the source of information that you come across. If something seems to good to be true, or so bad that it keeps you up at night, then verify it (as you know, I always recommend Lymphomation.org as an excellent first stop if you have questions). I know of people who don't want to know anything about their cancer, just trusting whatever the doctor recommends, and that's fine -- we all handle this the way that makes sense to us. And others (me included) want to know everything they can. And that's great, too. But what's bad is being in the middle -- sort of knowing, and not really being sure what's true.

5 comments:

anjou said...

Thanks for pointing folks to our website- www.lymphomation.org anjou (and Karl )

Steph31 said...

I actually had my second opinion at Dana Farber where the physician I saw told me the same thing. They suspect my follicular lymphoma is caused by pollutants/ pesticides. I have no doubt this person was probably told the same thing. I was diagnosed almost 8 months ago.

Anonymous said...

Gosh if only I knew what caused my Fnhl ...why doesn't my husband have it, or my siblings?
I'm the healthiest one of the bunch! Yet I get cancer...
Thx for another great blog.
Dx sept 2014. Grade 1, stage 4 ( can't believe that!)
Watching and waiting .
And wanting to know everything, that's why I read this blog!

Anonymous said...

Another good site for science based information about hon-hodgkin's lymphoma is nhlcyberfamily.org Between the one you mentioned and this one, people's bases are pretty well covered.

Virginia Miller said...

Thank you again for a great post! I really value the sources you cite and your emphasis on seeking out good information. I look at your blog every week!!