Thursday, July 27, 2017

Patient Distress Guidelines from NCCN

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.


Anonymous said...

Another great post Bob, thanks. I totally agree that FL brings a heavy emotional burden so I'm glad you're highlighting resources. I also follow Dr Sharmans CLL and Lymphoma blog (but I voted for you for the WEGO awards!) so in case you haven't seen it, I thought I'd mention he also has some helpful things to say. (especially this post

Shine on
P.S. I'm not very tech savy so apologies if the URL isn't clickable

Mylegacy said...

The thing about distress... when I was given R - the first time - I was told to tell the nurse immediately if anything felt "different." She must have assumed I'd report anything painful or alarming.

As the dose was slowly increased I felt no pain - but I felt worms starting to squirm under the skin of my forehead and across my skull. I remember looking around at the other 17 people in their chairs in the hall and thinking is this what they mean by "different." Why is no one else questioning anything? Am I a wimp?

I told the nurse and all holy hell broke loose (almost as if I'd fired Jeff Sessions). It turns out the nurse did just mean "different." I had done the right thing.

My distress was - I didn't know where on the scale of "different" it was appropriate to stand up and speak. On reflection, I'd really have liked to have had a session with me, some other newbies, and a few good souls who had been through the experience I was just entering and would be willing to share their experiences (good and bad) and lower my distress through enlightenment.

Bob, as always - thank you for your site - for keeping the faith.

Jackie said...

Hi Bob, as a 10+ year complete remission (diagnosed with stage 4 grade 3A follicular NHL)(after 6 rounds of Chop-R and 2 yrs of R-Maint.) I've been relatively distress free. Lately though, I've had problems with my IGG levels. My immune system seems to be shot because of the Rituxan. I now have to get an infusion about every 3 months to boost my IGG levels. This has also left me open to catching everything. I've been fighting a sinus infection for over 6 weeks. I've even taken Prednisone, but to no avail. I must say that this has left me in a state of distress. We all must realize that over time the wonderful drugs that helped save us, have some horrible side effects. I see my Oncologist in about 3 weeks, I'm not going to lie, I'm a bit worried that I may be going into relapse. The 1st time I've been worried in over 10 years. Anyone else out there experienced any of this?
Thanks for this wonderful blog.
Keep up the good work!

Lymphomaniac said...

Pat, Thanks for the link. I like Dr. Sharman a lot. He's been writing more about CLL than NHL lately, but I think that's because there is so much good stuff happening in CLL these days. And thanks for the link -- not a topic I like to think about, but always good to know that there are resources out there when needed (but not for a long time, for any of us, I hope).

Lymphomaniac said...

Thanks for sharing. It is amazing how some of us "don't want to be a bother," and don't speak up. But, as you say, maybe some help from the other end would good -- doctors who can prepare us for what is to come, or who can hook us up with others who have been through the experience. I've written before about my own experiences with an online support group, where those kinds of questions got asked and answered all the time by people who had been through the experience. But, to your point, it would be good if doctors had access to those kinds of resources and could point us to them before we needed them.
Thanks for reading.

Lymphomaniac said...

Hi Jackie,
Yeah, that worry never really goes away. I'll celebrate 10 years in January, and every now and then, I'll come across something that gets me a little concerned for a day or two. I'm sorry you're feeling some distress. I hope the doctor's appointment goes well, and eases your worries a little. Let us know how it goes.

Jackie said...

Hi Bob, sorry it took so long to get back to this post. I was hospitalized for 3 days due to a sinus infection that my body just couldn't shake. Turns out my IGG levels are very low again and this was the root cause of my being so sick. I will now have to have IVIG infusions every month. Rituxan is a wonderful drug, but the side effects can be a bit troublesome. Here I am over 8 years out from my last Rituxan Maintenance treatment and my immune system is shot. Oh well, small price to pay for being cancer free. Anyway, I wanted to let you know that I'm still in remission and my stress (distress) was for nought.
Again, thank you for this blog. I used to belong to another group, but it became very political and was no longer a source of support.
Take care!