The Journal of Clinical Oncology published a study a few weeks ago called "Anxiety and Health-Related Quality of Life Among Patients With Low-Tumor Burden Non-Hodgkin Lymphoma Randomly Assigned to Two Different Rituximab Dosing Regimens: Results From ECOG Trial E4402 (RESORT)."
As that very long title suggests, Follicular Lymphoma patients were divided into two groups. Both received four rounds of Rituxan, and if they responded, one group received Rituxan Maintenance, and the other Rituxan only after their lymphoma had progressed enough that it was necessary. The patients were given surveys to measure how much anxiety they had at various points along the way. they were also classified by the way they coped with their disease -- either through "active coping," or "avoidant coping."Active coping basically involves doing something -- either trying to change your the thing that;s causing you stress, or change your attitude about it. Avoidant coping is basically doing nothing -- trying to put it out of your head and hope it just goes away. As you might guess, psychologists think active coping is a better choice.
The researchers found some interesting things: anxiety related to their illness was about the same for both groups. Anxiety decreased over time for both groups. And Overall Quality of Life didn't change much over time. I think that has a lot to do with when all of this was measured -- AFTER that first treatment with Rituxan. It would be interesting to see how much anxiety there was for patients who watch and wait BEFORE they have an initial treatment.
I thought it was pretty interesting, too, that anxiety decreased over time. This isn't surprising. In my experience, and in conversations with other FL patients, I'd say it takes about six months after diagnosis to start to feel better, especially for watch-and-waiters. I think for many of us, we hear that word cancer and imagine the worst. It takes a while for it to sink in that we aren't going to die tomorrow, at least not from FL. (I should make clear that the patients in this study, like me, had low tumor burden, and so their FL was not as aggressive as it is for some others.)
One other important bit from this study: patients with avoidant coping styles were much more anxious than those with active coping style. In other words, pushing your problems away probably isn't going to make you feel better. I tell my kids this all the time -- you can try to pull the covers over your head and stay in bed, but all the only problem that will solve is a lack of sleep. Eventually, you're going to need to get up and deal with things.
The good news is, you are most likely all active problem solvers, or you wouldn't be googling "Follicular Lymphoma," or reading Lymphomation.org, or joining an online support group or a Facebook group -- however it is you first came across a link to this blog, you were doing something active to help you control your anxiety and learn more about your disease.
It's a better strategy, and I hope you are better for it.