Saturday, June 10, 2017

ASCO: The Emotional Psychology of Cancer

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.


Anonymous said...

Excellent commentary again.
I go back ito the cancer center I n August for my check up. I should have been happy at my last appt that the doc said " you don't have to come back for 6 months".
I was happy, but at the same time nervous. Now it's been four months, and my Watch and Wait ( watch and worry) anxiety levels are amping up,
Next appt I'm going to ask for a 4 month interval, if he suggests 6 months again. I can't take it!

Thank you, Bob, for taking the time to write this incredible blog.

Lymphomaniac said...

Thank you, Donna. I'm always glad to hear that the blog is helping.
And I'm sorry you're feeling anxious. Ask for the 4 months, and insist that he gives it to you.
Good luck.

Anonymous said...

Hi Bob,

Thanks for this post. The anxiety and stress can sometimes be a real struggle. It's been 4 years since my diagnosis, 3.5 yrs. post RCHOP and 1.5 years post R Maintenance. Although I'm fine most of the time, I can't help feeling like I'm waiting for the other shoe to drop. Instead of being relieved that my 5 year anniversary is approaching ( so many cancers are considered cured at the 5 year mark), I feel like I'm just that much closer to a relapse. I see my oncologist every 4 months, and that is stress inducing as well. I always wonder what that blood test will reveal..
I think it's just something that those of us with indolent cancers just learn to live with.:) Lilly

Lymphomaniac said...

I remember having mixed feelings at my 5 year mark, too. I recently had the opportunity to talk to a long-term survivor of CLL (another indolent blood cancer) who is also a doctor, and told him I had similar feelings that you have -- it's been 7 years for me since treatment, and sometimes I wonder if that means I'm "due." He reminded me that I just can't think that way -- there's no point in living your life just waiting for something bad to happen. If you keep doing that, you'll never get out of bed in the morning. I know that, of course, and I'm sure you do too, but it was a nice reminder from a wise man anyway.

harada57 said...
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