Research has suggested some women experience mental haziness, dubbed "chemo brain," during and soon after chemotherapy treatment. And one recent study found evidence of changes in the activity of certain brain regions in women who'd undergone chemotherapy.
But some researchers have questioned whether those problems are due to the specific drug treatments, or possibly to the cancer itself. In the new report, breast cancer survivors showed certain small mental deficits, regardless of whether or not they'd had chemotherapy.
"It's a very, very subtle thing. We're not talking about patients becoming delirious, demented, amnesic," said Barbara Collins, a neuropsychologist who has studied chemotherapy-related cognitive changes at Ottawa Hospital in Ontario, Canada, but wasn't involved in the new study.
"We're talking about a group of people that are saying, 'I'm pretty much still able to function, but I find it harder...it doesn't come as easily, and I can't do as many things at the same time.'"
The current study involved 129 breast cancer survivors in their fifties, on average. About half of them had been treated with radiation and chemotherapy, while the other women only had radiation.
Six months after finishing treatment, and another three years later, women took a range of thinking and memory tests. Their scores were compared against the performance of 184 women who'd never had cancer, but were a similar age and from the same areas.
A notable finding is the absence of appropriate communication between women and their doctors –that is, a disconnect between what women tell their doctors about side effects and what they actually experience, and/or selective hearing by medical professionals on how treatment is influencing a woman’s quality of life.
“Clinicians consistently underestimate the side effects associated with treatment,” said lead investigator and clinical psychologist Dr. Lynne Wagner.
“They give patients a drug they hope will help them, so they have a motivation to underrate the negative effects. Patients don’t want to be complainers and don’t want their doctor to discontinue treatment. So no one knew how bad it really was for patients.”
The symptom most likely to cause women to stop using the drugs was joint pain. Other side effects women reported as compromising their quality of life were hot flashes, decreased libido, weight gain, feeling bloated, breast sensitivity, mood swings, irritability and nausea.
The medications — aromatase inhibitors — stop the production of estrogen in postmenopausal women, whose breast cancer cells are stimulated by estrogen.
The research is timely as two-thirds of breast cancers are estrogen sensitive, and aromatase inhibitors reduce the recurrence of cancer in postmenopausal women.
Investigators discovered women at the highest risk of stopping the medications before the recommended five years were those who were still experiencing residual side effects from chemotherapy or radiation therapy when they start the aromatase therapy.
Women who had surgery for breast cancer but not chemotherapy or radiation therapy, or who weren’t taking many other medications, were more likely to keep taking the aromatase medication.
“The more miserable they were before they started, the more likely they were to quit,” Wagner said. “By the time they get through chemotherapy or radiation, they have to face five more years of another medication that will make them feel lousy. They feel like they already lost enough time to cancer and have reached their threshold for feeling bad.”
Wagner called it “a wake-up call to physicians that says if your patient is feeling really beaten up by treatment, the risk of her quitting early is high. We need to be better at managing the symptoms of our patients to improve their quality of life.”
A significant finding of this study is the discrepancy between medical professionals’ opinion of the medication side effects and a woman’s actual experience.
This disconnect is clearly depicted when comparing previous research – where clinicians reported 5 percent of patients experiencing moderate to severe symptoms – as compared with the current study’s discovery of 36 percent reporting significant side effects.
Researchers found after three months of treatment 33 to 35 percent of women had severe joint pain, 28 to 29 percent had hot flashes, 24 percent had decreased libido, 15 to 24 percent had fatigue, 16 to 17 percent had night sweats and 14 to 17 percent had anxiety. These numbers increased as women were on treatment longer.
Earlier studies also asked women to recall their symptoms after treatment ended, which is less accurate than reporting them at regular intervals while taking the drugs.
As a result of the side effects, 36 percent of women ended treatment before an average of 4.1 years. After two years, 10 percent had quit; the remainder quit between 25 months and the 4.1 years.
“These findings can help us identify women at risk for quitting the therapy, counsel them about the importance of staying on it and provide treatment for troubling side effects,” Wagner noted.
Weight gain can be addressed with nutritional counseling, while mood swings and irritability can be treated with cognitive-behavioral therapy or mind-body techniques, Wagner said.
Joint pain can be reduced with nonsteroidal anti-inflammatory drugs, or women may be switched to a different hormonal medication. Nausea can be reduced with medication.
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