The Emotional Side Effects of Cancer Treatments

This past week, the European Society for Medical Oncology (ESMO) annual meeting took place. There's some good stuff coming out of it. I know I tend to focus on oncology meetings that take place in the United States, like ASCO and ASH, but I'm becoming more aware of some of these meetings outside the U.S. lately. I plan to look at a couple of Follicular Lymphoma-related presentations over the next week or so.

But first, a report about a session called "Change of patient perceptions of chemotherapy side effects in breast and ovarian cancer patients." I came across this on Facebook, where it was posted by Patients Against Lymphoma, the folks who put together Lymphomation.org. (While I'm here, I might as well link to their Facebook page, too -- consider Liking it if you're on Facebook.) I'm not focusing so much on the breast and ovarian cancer part of this, but on the results that are talked about in the link -- the emotional side of cancer treatments.

I've been focused on this subject a lot lately -- the idea that Follicular Lymphoma is as much an emotional disease as a physical disease, since for so many of us, we watch and wait. Sometimes that watching comes before we even get treatment, and sometimes it comes after we get treatment, even if the treatment was successful. It's kind of the way it goes with an incurable cancer -- we're always waiting for the Big Return that we're told is coming at some point. There's an emotional side effect to all of that, even when there are no physical side effects.

The ESMO presentation was a follow-up to research done 15 years ago. Patients were give chemotherapy for breast or ovarian cancer, and given a survey before, during, and after they had chemo. Patients were presented with two sets of side effects of chemo. One set listed physical side effects, and the other non-physical side effects. they were asked to choose the 5 from each list that concerned them most. then those ten were put together, and they were asked to choose the top five in the combined list.

What the researchers found was that, over time, the concerns change. At the beginning of chemo, there is more emphasis on physical side effects. But as they get used to these, and they get treatment (anti-nausea drugs for example), the non-physical side effects become much more of a concern.

And the researchers noticed. As the lead researcher said, "As doctors, these findings might lead us to consider possible improvements to the accompanying therapies we offer our patients....There is also a clear case for providing stronger psychological support to address patients' social anxieties and family-related concerns."

I like to hear that. I like when doctors recognize the emotional needs of patients, because I think they too often forget about them.

And that matters a lot for Follicular Lymphoma patients in particular. My blood work might be "rock solid," as Dr. R used to say to me. But my anxiety might be spinning like the centrifuge that separated my blood sample -- anything but "rock solid." I'm not so much worried about right now. I might be worried about what happens six months from now, when my daughter starts looking at colleges, and I worry about how I'll pay for it if I get sick. With FL, the worry always seems to be about later.

More from one of the research team members: "The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease....Going forward, similar studies also need to be done for other types of cancer - including analyses of how an optimal management of side effects influences the disease trajectory."

Amen to that. I would welcome and encourage researchers to keep looking into issues like the emotional needs of patients, the ways Quality of Life are affected by treatments, and the unique needs that come with different types of cancer.

In the meantime, you can help yourself by being honest with your doctor and asking for help if you need it. Most hospitals have some kind of emotional assistance programs (a social worker, or psychologist, or some other therapist), so a good oncologist should know about where you can get help.

And there's no shame in needing help. You wouldn't try to tackle the physical problems of having cancer all by yourself (at least I hope you wouldn't), so why would you try to deal with the emotional problems by yourself?