Thursday, May 26, 2016

NCCN Guidelines for FL Patients

The National Comprehensive Cancer Network (NCCN) recently published a series of Patient Guides for lymphoma. One of the guides focuses on Follicular Lymphoma.

The NCCN is a group made up of 27 well-known cancer centers. One of their main projects is to publish clinical guidelines for different types of cancers (including, of course, Follicular Lymphoma) -- basically, instructions for how oncologists should treat a particular cancer, based on what symptoms the patient is showing. The guidelines are created by experts in the area.

The guidelines seem to be especially useful for general oncologists -- doctors who treat lots of different types of cancer, rather than specializing in one type. Generalists can't really keep up on all of the research on all types of cancer and still have time to take care of patients. (Goodness knows I have a hard enough time keeping up with one type of cancer and still keep my job.) So the guidelines are useful in squishing all of that research into one set of recommendations.

That seems to be how my oncologist, Dr. K, uses them, and how he approaches my treatment. (I've said before that this is a little frustrating for me. I want to have a conversation about current treatment options, and he's not prepared for that. Which is fine -- at least for now.)

I've looked at those clinical guidelines myself, and they do seem useful. The downside to them is that they kind of limit options -- for the most part, they say if a patient is in X state, then the treatment should be Y. That's not always bad -- these are recommendations from experts -- but in the wrong hands, they could cut out some good options.

The other problem, from a patient perspective, is that they just aren't meant for patients. They're a little technical. Cancer Nerds (like me) kind of enjoy them. (They're set up as flow charts, so it's fun to guess what the next step they recommend will be, to see if I'm right. So I end up sitting on the couch by myself, looking at the guidelines, talking to myself. "Asymptomatic stage 1 FL? Watch and Wait. That's right. OK, symptoms show up? I say Rituxan.....Hah! I was right!" That's what happens when my wife is out and the kids are in school and I'm along. It's a real party in my house.)

So the guidelines are fine for Cancer Nerds, but kind of hard to read if that's not your thing. So that's where the new Patient Guidelines are for -- the same information, in a much easier-to-read, patient- friendly form, with simpler language and nice graphics.

The Follicular Lymphoma guide is fairly long -- about 72 pages -- which might be one of the downsides. But that might also encourage people to really read and understand their disease.

I think they do a good job of describing the different treatments (though I think I would have listed Rituxan first under "Targeted Treatments," not Idelalisib, given how much we know about Rituxan over its long, long-term use). I think they do a less good job in the section on deciding on a treatment. While they stress that the treatment choice is up to the patient, they also don't say much about how to make those decisions. They recommend some very good questions to ask the doctor, but in the end, they're saying "It's up to you, just ask your doctor and do what she says." Kind of trying to have it both ways but leaning toward the doctor.

Which, I suppose, is how it should be. In the end, we do all need to listen to our doctors. And these guides will be especially helpful for patients who aren't reading medical journals or NCCN clinical guidelines, anyway. Not everyone wants to do the work of searching and learning. And that's fine -- we all handle our cancers in the way that makes most sense to us. The NCCN patient guides will be a great resource for certain types of patients. And for the rest of us, we can probably learn something in there, too.

But a good guide shouldn't stop us from continuing our search for the newest and best information. And there are plenty of places to find it, and if you find one that works for you, stay with it. (I don't make any secret of my love for I hope this one will work for some folks.


Anonymous said...

Thank you so much for sharing. The guidelines reinforce that I've done all the right things, had all the right tests, and watch and wait is the right choice for me.
Your research is certainly appreciated by me!

Anonymous said...

Looks like Doctors both side of the pond are trying to remove patient choice as an option.
Now just stay calm and wait till you are an Emergency, then we will treat you!