ASH: Choosing Wisely

This comes from the American Society of Hematology itself, rather than research presented at their upcoming conference: their list of 5 hematology procedures that should be questioned. I'll say right off that none of them are directly related to Follicular Lymphoma, but it's an important list anyway.

The list was released as part of the Choosing Wisely campaign, sponsored by the ABIM Foundation. The campaign is working with medical organizations like ASH to highlight procedures that are commonly done, but not necessary. The campaign actually has two sets of lists: one for doctors (like the ASH list), and one for patients, with advice on things like when it's necessary to get allergy testing, or have a colonoscopy, or stress tests.

I think the lists are important mainly because they encourage conversation. Often, we have to make decisions as patients when we are not in a state to think rationally. And too often, doctors do things because it's the way they've always been done. The lists encourage us to question ourselves and our doctors, and make sure that whatever decisions we make are the right ones, doing more good than harm.

Now, that said, I think it would be just as dangerous to accept the advice on one of these lists without question as it would to do what a doctor says without questions. And that's the main point here -- ask questions, get information, make good decisions.

As for the ASH list, it offers five "commonly used tests and treatments to question" because they are used improperly. As I said, none deal specifically with Follicular Lymphoma, though one does deal with lymphomas:

"Limit surveillance computed tomography (CT) scans in asymptomatic patients following curative-intent treatment for aggressive lymphoma."

To be clear: these are CT scans after treatment for aggressive lymphomas (say, DLBCL) that have been treated with the intent to cure (with, say, R-CHOP as an initial treatment), when the patient has no other symptoms that would justify a scan. The reasoning behind this suggestion is 1)  there is no evidence that CT scans to look for signs of returning cancer do much to increase Overall Survival, and 2) there is some evidence that all that radiation can cause secondary cancers later on.

So where does this leave me? As an asymptomatic Follicular Lymphoma patient, not much. But what it does do is get me thinking: do I need a scan?

I haven't had one in a long time -- coming up on 4 years in the spring. Do I need one? I don't know. I don't have any symptoms -- and goodness knows I look for them all them time. No bumps that are growing. No weird fevers or chills. My blood work is always good. But part of me really wants to know what's going on inside. Rituxan gave me a Partial Response. Is it any worse? Is there an area growing that I should be keeping an eye on?

I bring this up with Dr. R pretty much every time I see him. And I'll bring it up again. And I'm guessing he'll tell me the same thing he tells me every time: "Yeah, maybe. It's been a while. We'll see how things look at the next appointment and decide if we should do one. It might be time." And then he puts me off again. Which is probably what he should do, given my lack of symptoms.

And that's why I value a list like ASH's: it makes me ask questions and start a conversation with my doctor. Even if it's a question that isn't directly about my cancer, it gets me thinking.

The danger, of course, is that our thoughts sometimes get away from us. I've been doing this long enough to get a post-it and write "ask about CT" and stick on the calendar for January when I have my appointment. Five years ago, reading questions about scans might have had me up at night wondering why I wasn't getting one and what I was missing. I don't miss those days, and I feel for those who are going through them now.

But in the end, asking questions -- and getting answers -- is worth a few hours of sleep. Education is key to survival, physical and emotional.