ASH Preview: Doctor-Patient Communication for FL

The ASH Abstracts are here!

ASH is the American Society of Hematology, the country's largest organization for specialists in blood cancer and other blood diseases. Every year in early December, they hold their annual conference. And a few weeks before, they release the abstracts for the conference -- the summaries of the presentations that researchers will make.

Summaries can't tell you everything, but they do give the highlights. So every year at this time, I look through the abstracts for Follicular Lymphoma and right about the ones that look interesting to me. So maybe they aren't the most "important" (though if there is some major news, I'll write about that).

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So here's the first one: "A Cross-Sectional Study of Unmet Needs of Lymphoma Patients in Patient-Doctor Communication: Follicular Lymphoma (FL) and Diffuse Large B-Cell Lymphoma (DLBCL)."

This presentation looks at data from the Lymphoma Coalition's 2018 Global Patient Survey, and it compares responses from Follicular Lymphoma patients and DLBCL patients about their needs for communication with their doctors. It seems to me that the communication, overall, is not good.

Overall, the survey looked at responses from 6631 lymphoma patients in over 70 countries. 937 of them have Follicular Lymphoma, and those were the responses that interested me most, of course.

As for ages 17% of FL patients taking the survey were under 40 (I was diagnosed at 40), and 33% were over 60. My math skills tell me that 50% were in their 40's and 50's. (That's not when they were diagnosed, just how old they were when they took the survey.)

As for communication,  65% of patients would have liked more information and support when they were diagnosed, but only 39% said their doctor encouraged them to have more discussion and 23% said they were referred to other places for support. 

About 70% of FL patients reported physical issues to their doctors, but only 42% reported emotional issues. Only 40% felt helped by their doctors for physical issues, and only 31% felt helped with their emotional issues.


62% of patients felt helped by doctors for treatment side effects, but only 33% felt helped for Fear of Relapse.

Before moving on, I think it's important to point out that this survey might not represent all FL patients. Since it was put out by the global Lymphoma Coalition, it seems to me that a particular type of FL patient was more likely to take it -- one that's more of an advocate, and maybe (as a result) one that is more critical. (I'm thinking of myself.) That might have made the numbers lower.

That said, the problems pointed out by the survey are troubling, especially with the way patients and doctors talk about emotional needs.

Troubling, but not surprising.

I've been saying for years that Follicular Lymphoma is an emotional disease as well as a physical disease -- maybe more so than for other cancers, because we often have no physical symptoms, and are waiting around for things to happen.

I wonder if that's part of the issue with FL patients not feeling like their emotional needs are taken care of. An experienced doctor might see the FL diagnosis and think "Slow-growing, we can watch and wait, I'm not too concerned yet." But a patient thinks "CANCER!" A doctor might see no physical symptoms and that means nothing to worry about. But a patient, as many of us know, can't help but worry.

I don't know if a survey like this will mean that doctors start to pay more attention to these things (my guess is that it won't). So that means it's on us as patients to ask for more. We need to insist that we get what we need, even if it isn't offered to us.

That's not easy when we're marinating in the emotions that come with a cancer diagnosis. But it's exactly the reason we need to.