"Ask the Doctor"

Last night, I went to an "Ask the Doctor" event sponsored by the Lymphoma Research Foundation. It's one of the many Education Programs that LRF sponsors. For this event, local lymphoma patients gathered in a hotel conference room to hear from a doctor about lymphoma.

It was, overall, a mixed experience for me, but I do think it's a worthwhile one. If there is an event near you, I suggest you check it out.

This event took place near the hospital where I see my oncologist. (I have an appointment next week, by the way, so I'll have an update on my health in a week or so.) It was an OK location, though the parking garage was tiny and cramped and I dented my car trying to get through it when I arrived. So I went into the event in a bad mood -- I think it's only fair to put that out there. Follicular Lymphoma is an emotional disease, after all.

(I say that half jokingly, but I was kind of surprised to feel a little anxious when I was on my way there. I read and write and think about Follicular Lymphoma literally every day. But going to an event about lymphoma had me just the slightest bit on edge. Maybe that's why I did such a bad job driving in the hotel parking garage.)

We were given dinner, which was very nice, since the event started at 6:00pm. The speaker was a lymphoma expert and professor at the medical school that is connected to the hospital.

He did a good job, but if I have a big criticism, it's that he over-simplified things. His presentation began with on overview of lymphoma -- the different types, their causes, their symptoms, their treatments, etc. To be fair, he had about 45 minutes to give the basics for about 60 different diseases, and he was speaking to about 20 people, and all of us had different types of lymphoma and were at different points in our lives as patients (some seemed newly diagnosed, some, like me, were diagnosed 10+ years ago.) Pretty hard to say something that will satisfy so many needs (I know from experience), so the easiest thing to do is be as basic as possible and make sure that everyone understands what you're saying.

The downside of that is that you can over-simplify. And I think that's what happened. So, for example, he did talk about indolent (slow-growing) lymphomas, and of course, FL is one of them. But he painted the picture for indolent lymphomas as a lot rosier than I would, kind of downplaying some of the side effects of treatments, and pointing out that most people with FL or other indolent cancers may "die with it, rather than of it." All of that is true. But there was no mention at all of transformation or EFS24. Those FL variations affect a pretty significant number of FL patients. If the idea was to give an overview to people, leaving out the difficult stuff seems unfair.

And, again, I admit that he had a tough job to do in 45 minutes. Lots of info, for lots of different people, in a short amount of time.

And I also admit that, given what I do, a "basics" presentation was going to frustrate me. I need to hear some more advanced stuff. That just wasn't the purpose of this event.

All that said (and despite denting my car), there were some good things that came from the event. there were lots of things he said that I would have said differently (more clearly, I think, and maybe less simply), but there were some places where he did a good job of making sure patients understood some very important ideas.

He pointed out that one of the difficulties of having indolent lymphoma is trying to explain it to family and friends. That's a really insightful point. People hear "cancer" and don't understand "watch and wait." And so they think the cancer isn't "serious" or even isn't "a real cancer." There needs to be more done for patients to prepare them for this.

He also did a good job of describing things like "palliative care," which is becoming more of an issue in the oncology community. People associate the term with end-of-life care, but palliative specialists help with pain and comfort at all stages of a cancer patient's disease, nit just when treatment options are exhausted. That's another thing patients need to be aware of.

Probably the most valuable part of the event was the question and answer period -- the whole point of an "Ask the Doctor" event. If the presentation part of things was too basic and simple, this was where the doctor got to really get specific and specialized. People had some very specific questions about their own situations, and he answered them well (based on the reaction I saw from the patients, who seemed satisfied with the answers).

So, overall, there were some things I wasn't crazy about (another one -- there was time for "networking" on the schedule, but it wasn't really set up for talking to any other patients, which is too bad. That's always the best part about being with other patients.)

That I said, I'm happy I went, and I recommend you go to a similar event if you have the chance. (Click here for other LRF events.) You might learn something, and you'll have the chance to ask questions of an expert who may give you a new perspective on things.

(Plus, I got a nice sandwich with bacon and avocado in it, plus a big chocolate cookie. that didn't make up for the dented car, but it came close.)