Fear of Recurrence

The organization Lymphoma Canada hosted a really great webinar recently called "Fear of Recurrence for Lymphoma Patients." The webinar features Dr. Sophie Lebel, a clinical psychologist and professor at the University of Ottawa. Dr. Lebel does research on cancer survivors and their families, and fear of recurrence is one of her special interests.

The webinar describes some of the research she has done -- how common it is for patients to have great fear that our cancer will come back -- and more importantly, how we can manage that fear.

Interestingly, Dr. Lebel says that about 49% of cancer patients experience fear of recurrence, and it is the most common response when cancer patients are asked what need they have that wasn't met by their oncologist. I don't doubt the research, but 49% seems really low to me. If half of you out there have had successful treatment and feel great, I'm very happy to hear it.

(Dr. Lebel also acknowledges that for those of us with a disease like Follicular Lymphoma, it might be a little tougher to get past that fear, since FL is considered incurable.)

Dr. Lebel also thinks it's important that we understand that there is a continuum for this fear. It's normal for us to feel some fear occasionally (especially when we have a scan r doctor's appointment coming up) and we usually can manage that. However, some of us might sometimes experience more extreme fear, to the point where it interferes with living our lives, and we can't manage it ourselves. Interestingly, research shows that young people and women are more likely to experience this kind of problematic fear. The same goes fo those with multiple physical symptoms and side effects.

There is also no connection between statistical risk of recurrence and level of fear. In other words, you might be told that after treatment, 15% of people will relapse. However, you might feel that there is a 100% chance that the cancer will come back. This makes perfect sense to me. Statistics are rational; fear is emotional. I've certainly been in a situation where numbers did nothing to make me feel better. I was convinced that whatever small number there might have been that was negative, that's where my mind would go.

Most importantly, Dr. Lebel gives some strategies for managing the fear. One of the biggest pieces of advice she gives is to talk. We often keeps things inside, because we don't want to burden others of increase their fears. But all this does is make the fear grow. Talking helps. I found that early on.

Self-care helps, too. Exercise, meditate, do yoga. Moving around helps release tension and increase some feel-good hormones. 

And if those things don't work, it's OK to seek help. That's a big lesson to take away.

There's more to this excellent webinar, and I hope you'll watch/listen to the whole thing. The webinar recording is at the bottom of this page (the video at the top is interesting, too, but it's not the webinar).

If you've been reading for a while, you know how often I say this: Follicular Lymphoma is an emotional disease as much as it is a physical disease, because for many of us, we aren't experiencing physical symptoms all the time. All cancers have emotional components, but FL is special in that way. Pay attention to things like fear. Help yourself, and get help from others when you need it.