HYANNIS – Imagine being able to knit complex patterns for years, only to discover that now you can’t figure out how to make a simple hat. You can no longer talk on the phone and cook dinner at the same time. You pick up your son at school for a dentist appointment and drive home instead.
This is what it can be like to live with “chemo brain,” a term coined to describe the mental fogginess and difficulty with concentration so many people suffer from while undergoing chemotherapy.
The problem is real. In a recent study, researchers at the Wilmot Cancer Institute at the University of Rochester Medical Center in New York compared self-reported problems with memory and critical thinking skills among 581 women with breast cancer and 365 matched women without cancer.
The women with breast cancer did the Functional Assessment of Cancer Therapy – Cognitive Function questionnaire before beginning chemotherapy, directly after completing treatment and again six months after treatment had concluded. The control group did the questionnaire at similar intervals.
The analysis of the data showed that 45.2 percent of the women who underwent chemotherapy reported cognitive decline in the questionnaire scores during the time before and after chemotherapy, compared to 10.4 percent in the control group during the same time period.
From the end of chemotherapy until six months afterwards, 18.4 percent of women who underwent chemotherapy were still experiencing symptoms compared to 11.5 in the control group.
Not a Good Understanding
Doctors have been interested in the reasons behind chemo brain for at least 20 years, according to Cape Cod Hospital oncologist Jennifer Crook, MD.
“Patients undergoing chemotherapy often feel that they are experiencing some cognitive decline,” she said. “What they typically describe is a decrement in what we consider higher level functioning – things like memory recall and the speed at which they can do numerical tasks like balance their checkbook.”
At this point in time, there is not a very good understanding of what causes the mental decline or if it even is related to the chemotherapy itself, Dr. Crook said.
“What is most interesting in this study is the fact that there were several factors predictive of the likelihood of having a decline,” she said. “Two of the significant predictors were the patient’s self-reported anxiety level and the patient’s self-reported depression.”
Oncologists have always known that those who are feeling less healthy mentally are the ones who are more likely to report feelings of mental decline. People with depression and anxiety struggle harder to cope emotionally with a very stressful medical condition and course of treatment.
This fact led Dr. Crook to hypothesize that at least some of the brain fog is caused by anxiety and depression.
“An interesting study would be to compare women with breast cancer undergoing chemotherapy with women who have cancer but don’t undergo chemotherapy,” she said.
The incredible advances in breast cancer care in recent years means that there are plenty of women who do not have to undergo any chemotherapy. If the tumor is caught early enough or they have the specific genetic markers that predict a very low recurrence risk in the future, it isn’t necessary.
“In an age-matched, disease-matched study, you would be equilibrating for the cancer piece of it and really better isolating the chemo piece of it,” Dr. Crook said. “If you’re going to call it chemo brain, you really want to be able to better determine if it is the chemo or the stress of the situation.”
Is Adriamycin To Blame?
For years, oncologists have theorized that the drug Adriamycin, from the class of drugs called anthracyclines, was to blame, Dr. Crook said. There were a few small studies that linked the drug to mental decline. Even though it’s an effective drug for treating breast cancer, it is associated with a number of different negative side effects. It generates a fairly significant inflammatory response and there has been concern about neurological toxicity.
In the study, she was interested to note that 48 percent of the patients in the study were on an anthracycline regimen and 52 percent were getting non-anthracycline regimens. There was no difference in the results between the different chemo drug groups.
“It doesn’t mean the chemo is not doing something, but it does tell us it’s not just as simple as saying it’s that one drug,” she said.
There are no simple medical interventions that have been shown to alleviate the symptoms of cognitive impairment, but Dr. Crook said that all of the supportive services at the Davenport-Mugar Cancer Center at Cape Cod Hospital can help patients feel less anxiety.
Social workers at the cancer center do everything from offer counseling to helping a patient whose electricity is slated to be turned off because they can’t pay their bill. The social workers also make referrals to any services the patient might need, such as a wig maker or support group.
Since financial worries go hand in hand with cancer, Cape Cod Healthcare also has a new Oncology Finance Program to help patients navigate insurance, bills and financial assistance.
“We have great support staff for helping with all of those pieces,” Dr. Crook said. “And then for those who are interested in pursuing complementary care, we refer now to Cape Wellness Collaborative so that patients can get massage therapy, reiki, yoga, acupuncture or whatever else they think might be helpful.”
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