NCCN Guidelines for FL Patients

The NCCN recently published an updated Guidelines for Patients with Follicular Lymphoma. It's written for patients, and it's worth a look, especially if you're new to all of this.

The NCCN is the National Comprehensive Cancer Network. It's made up of a bunch of cancer research hospitals. Every year, they publish a different guide for oncologists for how to treat various types of cancer. So, for FL, it will break down what to do if a patient is at a certain stage and grade, and is showing certain symptoms. And if things change, or they had treatment and didn't respond, it will give advice on what to do next. It's based on the most up-to-date research, and for an oncologist who isn't a specialist, it can be very helpful, since they're trying to keep up on research for how to treat a whole bunch of different types of cancer. (It's also a good reason to get a second opinion from a specialist -- the general guidelines will probably be fine for most patients, but a specialist might have some different ideas for an individual patient.)

The guide linked above, though, is meant for patients, specifically. It discusses things in fairly simple language, and gives some basic information about the disease, how patients are diagnosed and staged, what treatments are available, and what certain medical terms mean.

I think it could be very helpful for a newly diagnosed patient. At the same time, I think it could be pretty overwhelming for a newly diagnosed patient. So maybe it's also good for a caregiver to read -- someone who has a little bit of distance from the disease. (Just a little.) For patients who were diagnosed a while ago, it could also be helpful to read. There's probably a few things you didn't know in there, and it might help you think about next steps.

One thing it can't do, though, is truly understand what it means to be a patient. It is helpful in many way, by providing easy-to-understand medical information. And it is patient-focused, reminding patients that they have a role in their care and treatment.

But I also recommend talking to other patients. Support groups, even online support groups, are great, and I've certainly talked about my own experiences with them. As helpful as it is to understand all of the medical issues, it's also important not to ignore the emotional issues that come with Follicular Lymphoma. The NCCN Patient guide doesn't address that -- and it's not meant to. But it's worth reminding you all to take care of the mental and emotional parts of this disease, to.

Enjoy the reading.