The journal JAMA Network Open just published a study called "E-Health Intervention for Fear of Cancer Recurrence: A Randomized Clinical Trial." To me, the details matter less than the lesson that we should be reminded of.
The study looks at survivors of Colorectal Cancer, not a blood cancer. In this trial, 95 survivors were divided into two groups to measure their fear of their cancer returning (certainly something that we can all relate to, no matter which of our body parts was affected by cancer). All were given something called the Fear of Recurrence Inventory (Short Form). You can see the Inventory here -- it asks questions about how anxious one is about their cancer returning, using a scale of 0-4. With 9 questions of the form, the lowest possible score is a 0 (no fear at all), and the highest is 36.
One group was given a specific intervention, the one that was being tested. It involved 6 modules that included written responses from a trained therapist, "delivered remotely, individually, and asynchronously over 10 weeks." In other words, the survivor didn't meet with a therapist, but was given personal written responses online to their fears and concerns. The other group was the control group. After taking the Inventory, they were given a diagnostic interview and then referred to a website with self-help exercises (no therapist gave them personal advice).
The trial found that the first group, who got the help from a therapist, had a much more successful time lowering their fear of recurrence. Between the two groups, there was a difference of about 19 points at the end of the trial (on that scale of 0 to 36). The score from the Inventory that signals a need for intervention is only a 3. By the end of the study, 81% of the first group has scores below 3, while only 43% of the second group did.
It seems like the trial showed that the specific intervention was very helpful for that group of Colorectal Cancer survivors.
But stepping back a little bit, I think it's a great reminder for all of us.
Sometimes we can deal with our own cancer-related mental health problems. And sometimes we need some help.
In some ways, it's hard to compare Follicular Lymphoma patients/survivors with those who have had Colorectal Cancer -- or most cancers, really. Folks with other cancers have that whole "5 year" thing, where they can be told that they are likely cured after that time. That's harder for us. We have it drilled into our heads that our cancer is "incurable." I'm not sure what that means, and it's awfully hard to measure it with a cancer that is slow-growing and that typically gets diagnosed when folks are on the older side. But I think it's true for most of us that we understand that we'll likely live with this cancer for the rest of our lives, whether it comes back or not. (And remember I'm saying this as someone who was diagnosed almost 18 years ago and hasn't needed treatment in almost 16 years.)
There's a different type of mental burden for us, but it's a burden none the less. I know for me, personally, it has gotten easier over time to not think about it coming back. But it's always there, quietly lingering, and some days, it comes back loudly. But I've learned to live with it.
My point is, there might be times when we can deal with the fear on our own. And there might be times when we need some help.
And it's OK to need some help.
Even if it doesn't involve us directly, this study shows that there is lots of help available, and it can come in many forms. It might be, like in this study, getting written responses online from a professional. It might mean seeing a professional face-to-face. It might mean being part of a support group at our cancer center. It could mean being part of a support group online. It could be something as simple as having coffee with a friend or loved one and talking.
I'm a big believer in talking about what we fear, and I think sometimes we need the reminder that it's OK to seek help when we need it.
Where I live, the leaves are changing, the days are getting colder, and the songs about Santa Claus are starting to show up in stores. It's a joyous time for a lot of people.
But it;s a stressful time for lots of people, too. A good time to start paying attention to how you're feeling and what you might need to do about it.
So this is just a reminder. If you need help, it's OK to ask for some.
I hope everyone is doing well.
6 comments:
Hi Bob! I was curious if you saw this and had anymore details on it then was in the article? https://www.businesswire.com/news/home/20251114839914/en/Tempus-and-IFLI-Announce-Study-to-Advance-Follicular-Lymphoma-Research
Thanks and appreciate your blog!
Feeling better since I get counseling. Sometimes now we hardly discuss the disease but rather other things eating at me, because the stress and emotional maintenance just feels good for overall mental health and wellbeing. Only wish I'd gone sooner. Granted, not everyone needs it. I did.
I'm happy to hear that counseling has helped you. It takes a certain mindset for it to be useful, I think, and some folks aren't there. And that's OK. As long as they found something that works, that helps ease the stress and the emotional anxiety. It's always good to hear that one of the options has worked for someone -- I think that makes it easier for others to take that step and try it, if they were feeling reluctant.
Hi Donnie. Thanks for reading the blog! I'm glad you have found it helpful. As for the link, I remember seeing back in February that this company was partnering with IFLI, but it was all very vague. I don't know much about IFLI, to be honest -- they're a nonprofit, but only a few years old. I see this current announcement as a little vague, too, but it sounds like they have a particular project in mind, which is great, and it being vague is because they aren't sure what they're going to find. I will admit that I have mixed feelings about Artificial Intelligence. I have read some really interesting research that shows its power for health and medicine, but I've also seen some examples of it being used really poorly, especially when it is used to replace human interaction. This seems like it will be the "good" type, using AI to help collect and analyze data. So maybe something will come of it. I'm certainly keeping an eye on it. Thanks again for reading, and thanks for the link.
Bob
Hi Bob, great article as usual. I was diagnosed almost 19 years ago. I feared reoccurrence for the first couple of years. To be honest it very seldom entered my mind most after that. I will be 76 tomorrow and perhaps it's because of my "advanced" age that I don't worry about it much.
This past August I did indeed experience a reoccurrence. It came back in my left upper glute just under the skin. Fortunately it was still low grade and I was treated with 4 rounds of Rituxan. The lump is gone and I will have a PET scan in two weeks to see if it has resolved. I feel great, I always did and am hopeful it is back to bed again.
I was 57 when I was originally diagnosed, and the thing that helped me the most was my faith. As corny as it sounds, faith has been my biggest support (along with my family and friends). When I found out it had returned, I was so surprised and a bit fearful, but my oncologist was pretty sure it would be taken care of with the Rituxan, that and my faith has gotten me thorough this once again.
I realize that not everyone feels this way and I am glad people have other options such as counseling.
Here's wishing you and everyone on this blog a very Happy Thanksgiving.
My FL only partially responded to R-CHOP (so POD24), and I then went into just over 2 years of intensive watch & wait before starting second line, with obviously PET-visible disease but no symptoms for that entire time.
Paradoxically, not making it to "remission" was in some ways a gift - I never had to worry about it "coming back" because it never went away in the first place. I'm now 3/4 of the way through a second line clinical trial (Mosun+Golcadomide), and had CMR right from the first interim PET at 3 months (and have stayed there for the 2 interim PETs since). At times I almost think that "being in remission" is mentally worse than just living with detectable disease - in that latter mode each scan was simply a question of "how much worse is it", which I confusingly found easier to deal with than the new (to me) question of "has it come back".
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