Five years ago, doctors and researchers began to acknowledge something that those of us who’ve undergone chemotherapy had long known: this aggressive cancer treatment can cause significant mental issues. Now, further research intimates that chemo’s cognitive side effects – “chemo brain” – may linger not just for months or years, but for decades.
Like so many women with invasive breast cancer, I had chemotherapy as part of my treatment. Choosing from an alphabet soup of different regimens, my oncologist prescribed a common combination, FEC: fluorouracil (5FU), epirubicin, and cyclophosphamide.
Four months later, weak, bald, recovering from mouth sores and pneumonia, I was back on the road to health – physically, at least.
Little did I know that mentally, my life had changed forever.
I had chemo brain.
In a 2007 post to this site, I wrote the following:
If your mind is a blackboard, chemo brain is the eraser. I couldn’t remember my phone number, my mother’s name, the street I lived on… not always, but frequently enough to be scary.
I didn’t know which way to turn a water tap, to make it work; my vocabulary evaporated like a summer shower on hot pavement. Heck, when I forgot my phone number I couldn’t even look it up in the phone book, because I couldn’t figure out what order the letters of the alphabet went in – THAT’S chemo brain.
I lived with chemo brain for four years; I made my peace with it, and developed a bunch of coping strategies that worked pretty well (lists, lists, lists!). But now, in the past six months or so, I’ve realized I’m getting better. I still struggle to find certain words – and that’s an issue, when you’re a writer.
But I seldom forget my best friend’s name, my son’s address at school, or the difference between left and right. Things are looking up; the sun is starting to clear the fog from my head.
Five years later, the fog is still here; it never did dissipate, entirely. The clear-headed, sharp woman I was at age 47, pre-cancer, has never returned.
My 50-something girlfriends say it’s not just chemo; menopause (a.k.a. mental-pause) seems to wreak the same type of intellectual havoc. The wry saying is, it’s OK if you forget where your keys are… so long as you remember what they’re for.
But still, 10 years post-chemo, I didn’t expect I’d be dealing with its side effects every minute of every day. Which is what I’m doing as I struggle to complete sentences, remember common aphorisms, and juggle a laundry list of tasks that really shouldn’t be as challenging as it seems.
In a new study released Feb. 27 by the American Society of Clinical Oncologists (ASCO), researchers show an association between chemotherapy and long-term cognitive dysfunction, including poor word recall; slow information-processing, and lowered coordination of thinking with hand movement (performing simple functions using your hands). The study involved women who received a common type of chemo (CMF) about 21 years ago.
On average, these women performed more poorly on an array of cognitive tests than their peers who hadn’t received chemo; and about the same as women who’d recently completed chemo. Overall, the magnitude of the loss was “comparable to roughly six year of age-related decline in mental function,” according to the study.
Dr. Tim Ahles, director of the Neurocognitive Research Laboratory at Memorial Sloan-Kettering Cancer Center in New York City, is the acknowledged leader in chemo brain research. Interviewed upon the release of the study, he cautioned that not all women experience cognitive problems post-chemo; and that even in women who do, symptoms may vary in severity. Women with more demands on their brain (e.g., a professional woman in a high-powered job) seem to have more issues than women enjoying a more relaxed lifestyle.
And Dr. Marisa Weiss, founder of breastcancer.org, notes that there are probably many additional factors playing into chemo-brain – including the hormone therapy drugs so many women take for 5, 10, or even more years after diagnosis.
Still, it’s nice to have official acknowledgement from the scientific community – once again – that chemo brain isn’t “all in my head.”
It’s real. And unfortunately, it’s lasting.