The often-invisible side effect of cancer treatment: Chemo brain

“Nothing came out,” she said. “And I thought, wow, this is really weird.”

She soon noticed other changes as well, like getting to the grocery store and not remembering what she needed, or reading a block of text and not being able to retain the information it contained.

For someone who read two books a week prior to her triple-negative breast cancer diagnosis, that last one was particularly hard to handle.

“The first year out from my treatment, I think I read two books the entire year,” she said. “It was super depressing.”

What Kratz-Gullickson experienced – and is still experiencing – is not uncommon. Many cancer survivors report cognitive changes as a result of treatment, a wide-ranging and broadly-defined phenomenon colloquially referred to in the cancer world as “chemo brain.”

“Most people describe it as a mental cloudiness or a decrease in mental sharpness that occurs after chemotherapy,” said Robert Hegeman, MD, an oncologist with the UW Carbone Cancer Center. “Some patients describe having trouble remembering things, trouble multitasking or finishing tasks, or difficulty concentrating. A lot of times, there’s an overlay of fatigue or low energy associated with it.”

Despite the name, chemo brain can be brought on by many different types of cancer treatments, including hormone therapy and radiation. However, the exact cause of chemo brain is still unknown, making it hard to treat but also hard to talk about.

While oncologists routinely discuss the side effects of chemotherapy with their patients, the talk often focuses on physical things you can really see and feel, such as hair loss and nausea. Chemo brain, on the other hand, can be a bit harder to pin down and more difficult to precisely measure. Cognitive changes don’t have the same visibility, and each patient’s experience can be wildly different.

“It’s highly variable,” Hegeman said. “Some people seem to have very mild chemo brain or even no problems at all, while others have a lot of trouble with it, or issues with it lasting a long time.”

Kratz-Gullickson, now 44 and cancer-free, falls into the latter category. In the five years since her treatment, the Beaver Dam resident is still feeling the lingering effects of chemo brain. She says she wasn’t prepared for how hard the cognitive impairment would hit her, or how difficult it would be to deal with.

With practice, her reading comprehension has bounced back over time – she’s now reading about one book a week – and the purchase of a thesaurus has helped tremendously. But writing still remains a challenge, and finding the right word in conversation can still sometimes be a struggle.

At times, she’s able to laugh and joke about not being able to conjure up the right word or finish her sentence. At other times, the feelings of frustration, shame or embarrassment start to creep in, especially at work or in conversations with people she doesn’t know well. She often finds herself explaining her situation, and while people are frequently emphatic and understanding, these conversations can put her in an uncomfortable spot.

What has further frustrated her is the trial-and-error process she’s had to go through to try and break through the mental fog.

“Years ago, I threw my back out and I did physical therapy for eight weeks and they taught me all the right exercises, and I was back to normal at the end of that,” she said. “Whereas it seems like nobody knows exactly what the right exercises are for this. There’s no mental physical therapy, there’s no regimen, and I’ve been having to guess at what’s going to work.”

Hegeman says when it comes to treating chemo brain, he usually recommends basic building blocks like a healthy diet, plenty of exercise and good sleep. “I understand these things aren’t always possible for all cancer survivors, and they don’t always cause complete resolution of symptoms, but we know they help greatly with the difficult physical and mental recovery from cancer treatments,” he said. “I also recommend support groups, stress reduction, mindfulness and meditation. Finally, I tell patients not to lose hope. For most patients, chemo brain symptoms improve with time.”

When it comes to helping long-term sufferers of chemo brain, however, things are trickier. Kratz-Gullickson says she’s tried switching diets, participating in new exercises, and meditating. Nothing has fully worked for her. She now relies on the occasional jolt of caffeine for a temporary brain boost, which she says helps in the moment, but adversely affects other parts of her life.

Hegeman wants patients like Kratz-Gullickson to know: the oncology community sees you, and there’s ongoing research to find a more permanent solution.

“We’re aware of it and are trying to make it better,” he said. “Some of the research is focusing on those lifestyle factors, but there’s also research going on looking at mental exercises, the use of stimulants like Ritalin or methylphenidate, as well as medications used to treat Alzheimer’s disease. There’s hope that some of these can make a difference.”

By talking openly about chemo brain, both Hegeman and Kratz-Gullickson hope that people will have a better understanding of what many cancer patients go through. That treatment can affect patients in a variety of ways – even if you can’t immediately see them.

And while Kratz-Gullickson accepts that her brain may never get back fully to where it was, pre-treatment, she does read the latest neurological studies and scientific papers with interest and hope. Because finding a permanent solution to chemo brain would mean more to her than just ditching the thesaurus and the uncomfortable conversations.

“It would feel like I was me again,” she said.