I've been thinking (and writing) a lot lately about the emotional effects of Follicular Lymphoma. I know I keep saying it, and you all already know it, but Follicular Lymphoma is as much an emotional disease as a physical one. Many of us show no symptoms, and need no treatment, for long periods. But that doesn't make our emotional needs any less important -- in fact, it might make them even more important.
I recently came across an article that followed up on the National Comprehensive Cancer Network (NCCN) national conference, which took place in March. Some participants were asked about "what's hot" in their fields, and one pointed to the NCCN's new Distress guidelines for patients (they were new in March, anyway).
This was the first I had heard of the Guidelines, and they actually look great. NCCN, which is made up of oncologists and the institutions they work for, has published guidelines of different types for oncologists for a long time. They have only recently started putting the same information into publications for patients. So while doctors and nurses and other cancer professionals had guidelines for helping patients in distress, there weren't any guidelines for the patients themselves.
And that's a problem.
There's no guarantee a doctor or nurse will read the distress guidelines, let along use them to help cancer patients. (Not sure how long the doctor guidelines have been out, but of all the doctors and nurses I have seen, no one has mentioned them to me before). And, as the head of counseling at one hospital pointed out in that article, “A lot of cancer patients want to be ‘good patients,’ which can mean
they don’t want to be whiners or give providers a reason to pull back on
treatment; therefore, they may under-report symptoms…. We depend on
patients to speak up about their challenges, so we can help them.”
Amen to that.
The NCCN Guidelines for Patients: Distress is pretty good. It's about 40 pages long, and easy to read. It starts with a description of what distress is, and some common situations for cancer patients that cause distress -- things like getting a diagnosis, or finding a new symptom, or learning that a treatment stopped working. We're all different, and we may have other things that add to our distress.
It goes on to give some tools to help you measure how distressed you are, using the "Distress Thermometer." It also gives some advice about how to create a team of professionals to help you manage your distress. (Lots of cancer centers have this kind of service. I don't think they get used enough, given how many people I see online who are experiencing distress.)
The guidelines also provide some help with having a conversation about distress with your healthcare provider. I think this is especially important. I get the sense that lots of doctors assume that, if we are asymptomatic, we don't have much to worry about. It is important to have those conversations with your doctor.
The guide is definitely worth reading, even if you aren't feeling lots of distress at the moment. To be honest, I'm not feeling much, at least not about my Follicular Lymphoma. (Now, as a father of three kids, 20, a8, and 16, plus a crazy dog, I have lots of other things to be distressed about. But my FL? I'm good right now.)
Maybe the time to be aware of these resources is exactly when you don't need them. Look over the guidelines with a clear head, and be prepared for a time when they might come in handy. (Though, of course, I hope that time never comes for us.)
And if you are feeling distressed, then this is a great time to take a look. You might find a source of your distress that you hadn't realized was a problem. Or you might find some resources that you didn't know existed.
But most importantly, I commend the NCCN for putting the focus on patient emotions -- making us and our health providers more aware of what';s going on in our heads and hearts, not just our lymph nodes and bone marrow.
I wish you all peace of mind and body.