As I said in the last post, there were some non-Follicular Lymphoma sessions at ASCO that I thought were really interesting. At least three talked about studies that looked at ways to reduce cancer patients' fears.
I said it last time, and I'll keep saying it -- Follicular Lymphoma is as much an emotional disease as a physical disease. Emotions play a huge role in an cancer type, for any cancer patient. But Follicular Lymphoma can be just a little different. For a lot of us, we don't have any physical symptoms. All we have are the emotional ones. Like fear that we are missing the physical ones. Worry that our watching and waiting is making things worse. Even guilt that we might not be dealing with a cancer that is as bad as some others. There's a lot going on in our heads and our hearts, and it's easy for doctors and others to assume that a lack of physical symptoms means there's a lack of emotional ones, too.
There were (at least) three sessions that looked at cancer patients' emotional psychology, and used rigorous scientific study to find ways to reduce their negative emotions.
The first looked at The Conquer Fear study. Conquer Fear is the name of a program that tried to teach cancer patients to reduce their Fear of Recurrence -- fear that their cancer would come back. It use techniques like attention training and detached mindfulness to get patients to be less afraid of their cancer coming back. The study had some patients use the Conquer Fear methods and others use relaxation techniques. The Conquer Fear patients had less anxiety about recurrence.
A second presentation described the CALM study. In this study, cancer patients had individual sessions over 3-6 months that had them explore things like communication with their health care providers, changes in themselves and their relationships, their sense of meaning and purpose, and their sense of mortality.This study, too, had a control group, but this one didn't get any emotional training. The CALM intervention patients showed less fear and greater ability to adapt.
A third presentation discussed something called STREAM, a web-based stress management tool for patients who were newly diagnosed. Patients would write online about their stress and receive feedback (also online) from a psychologist. Again, the group getting the intervention was compared to a group that did not get it. And again, those getting the intervention showed more positive ways of dealing with their cancer.
I don't think it matters which of the three studies did the best job. They all did different things, with slightly different groups of cancer patients.
The important thing is that they were all successful, and they all taught a similar lesson -- finding a way to work with your negative emotions is so very important for cancer patients. And that's true at whatever stage of this journey we are on.
And it's especially important for those of us with Follicular Lymphoma. We are told that, for most of us, our disease is incurable. That has to add a whole different layer of anxiety for us -- it certainly does for me.
I've told my story many times, but I'll give you a short version. When I was diagnosed, things were a whirlwind for a week or two. When they finally slowed down, I went into a deep, dark place. I was worried about my wife and small children. I'd break into tears every half hour or so. And I kept it all inside. When I finally started talking to my wife, things got better. And when I found a support group online, and could share with people who knew what I was going through, it got better still.
Recognize the emotional part of our disease. Find ways to deal with those symptoms, just as you would find ways to deal with the physical ones.
And if no one else seems to understand, feel free to write to me. I'm happy to listen.