Chemobrain: Getting Through the Fog
Gail Hughes, 63, from Teaneck, New Jersey, had a 4.0 GPA in college. She earned a master’s degree, taught junior high school science for years and then ran a daycare out of her home, often working 12-hour days.
So after being diagnosed with stage IV, HER2-positive, inflammatory breast cancer at the end of 2010 and starting chemotherapy, the symptoms of chemobrain hit her hard. The term chemobrain describes cognitive or thinking problems, including issues with memory, concentration and multitasking, that appear after a person begins cancer treatment.
After 3 months of chemotherapy, Gail had trouble remembering what day of the week it was. Simple math problems became hard for her. Phone numbers that had been in her head for years were no longer there.
“It may seem simple to most people, but it gets frustrating when it’s repeated and repeated,” Gail says.
What We Know About It
Gail is not alone in this experience. It is estimated that up to 75 percent of people who have chemotherapy during breast cancer treatment experience chemobrain. The problem isn’t unique to breast cancer, but it is possible hormones that are often involved in breast cancer, such as estrogen and progesterone, contribute to it.
Though the problem is common, doctors haven’t always believed it was real, or that its symptoms were caused by breast cancer or breast cancer treatments. Today, more researchers are studying chemobrain.
After seeing a family member’s experience with cancer, Heather Jim, PhD, became interested in the different ways that people react to cancer treatments. Dr. Jim is an associate professor in the department of health outcomes and behavior at Moffitt Cancer Center in Tampa, Florida. She’s spent about a decade researching chemobrain. Because of how common breast cancer is and how vocal its advocates are, much of the research that has been done on chemobrain has involved people with breast cancer, Dr. Jim says.
“What we’ve found is that even though some doctors still aren’t sure whether chemobrain exists, it really does exist,” she says. “The message to survivors is that chemobrain is a real thing. It’s not all in patients’ heads.”
But there is still a lot we don’t know about this condition, including how it works and why certain people get it and others don’t. The theories we do have may be connected to the doubts some people have about it being real, says Arash Asher, MD. Dr. Asher is the director of cancer survivorship and rehabilitation at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center, in Los Angeles.
In the past, it was thought that most chemotherapy medicines couldn’t cross the blood-brain barrier, an area inside the body that controls whether something can enter the brain. Many people considered it unlikely that chemotherapy could lead to problems with thinking. Yet research shows some kinds of chemotherapy can cross the barrier, at least in small amounts. But even if the chemotherapy can’t cross that barrier, Dr. Asher says, toxic chemicals that may be made in the blood in reaction to the treatment CAN cross it.
Chemobrain is seen in people of all ages. But, Dr. Jim says, older women may be more at risk. Treatment may speed up normal aging, causing thinking problems that are stronger and show up sooner than they would in a person without cancer. This is called the “accelerated aging hypothesis.”
Still, Dr. Asher says, there’s no reason to believe that people who have chemobrain have a higher risk of getting diseases like Alzheimer’s later in life.
“Certainly your brain ages, but I can guarantee you the chemo was a factor and the chemobrain was definitely different. It felt like [I was] just walking around in a complete fog,” says Susan McMillan, a social worker from Metairie, Louisiana. Susan was diagnosed with stage III breast cancer about 8 years ago, at age 52.
She had eight rounds of chemotherapy—one round every 2 weeks. After about three rounds she began noticing memory issues and had trouble focusing and reading.
Carmen Rivera, 50, from Miami, experienced chemobrain after being treated with a double mastectomy, chemotherapy and tamoxifen, a hormonal therapy that can be used to prevent recurrence, or return, of hormone-positive breast cancer.
After taking tamoxifen, Carmen had intense symptoms that she called “chemobrain on steroids.”
Carmen’s experience highlights the fact that “chemobrain” may not be the best word to describe this condition. Research shows symptoms may also be caused by other treatments, not just chemotherapy. Dr. Asher suspects that the more treatments—including chemotherapy, surgery, radiation and targeted therapies—the more likely a person may be to experience chemobrain.
Talking to Your Doctor
Carmen says hardly anybody talks about chemobrain, which frustrates her, since the condition had a big impact on her breast cancer journey.
“You have your oncologist; you have the surgeon; you have the nurses. It’s a huge team and nobody talks about it,” she says. “Maybe if they tell you about it ahead of time, you wouldn’t think there was something wrong with you.”
Don’t be afraid to bring chemobrain up yourself. Your doctor may be able to change your treatment plan or help you manage the side effects you’re having. If you think your doctor isn’t taking you seriously, or you want to see someone more experienced in treating chemobrain, ask to see a specialist, such as a speech therapist or a neuropsychologist, a doctor who focuses on the relationship between the brain and behavior.
Dr. Asher says it’s important to consider other factors that could make chemobrain worse, but can be treated or changed. Those factors can include:
- Poor sleep, chronic stress and loneliness
- Pain, depression and anxiety
- Lack of exercise, loss of muscle mass and poor nutrition
- Side effects of medicine for other health problems
In the year after Gail’s diagnosis, her mother, sister and her brother-in-law passed away and she took in her nieces for a few years. She also moved into a new home, which made it even harder for her to remember where she put things. The stress and the treatments made it hard for her to sleep, which made the side effects worse.
“There are people who go months and months having cumulative poor sleep. We’re learning that it can have tremendous effects on [thinking],” Dr. Asher says.
You don’t need to deal with these problems alone. Talk to a member of your healthcare team about how you feel and how they can help you feel better.
Ways to Cope
Chemobrain can interfere with your work, relationships and daily life. But there are steps you can take to lessen side effects and cope with them. Dr. Asher gives these tips for managing chemobrain:
- Get moderate exercise. Look into practices such as yoga and tai chi.
- Get enough sleep — 8 to 9 hours per night for most people.
- If you’re feeling depressed or anxious, talk to your doctor about medical and non-medical ways to manage those symptoms.
- Make to-do lists on a notepad; cross off items when they’re done.
- Mark important appointments on a calendar.
- Organize your surroundings; keep things like keys or glasses in a specific place.
- Remove distractions when you need to get things done; have conversations in quiet places.
- Don’t multitask; focus on one thing at a time.
- Note when chemobrain is taking place.
Carmen noticed her symptoms were worse when she was stressed. To help, she started doing yoga and meditating. Doing so calmed her and reduced her symptoms. She also relied on family and friends, who were understanding—like her sister, who took care of her during treatment.
“I consider myself extremely lucky to be surrounded by so many supportive co-workers and family members,” Carmen says.
One thing that many people with chemobrain swear by is laughter.
Susan couldn’t help but laugh when symptoms of chemobrain led her to put out raw shrimp on a block of cream cheese and serve it to guests at a party.
Gail sometimes makes up words as a lighthearted way of dealing with not finding the word she wants. She also lowers stress in her life by listening to music during dinner, rather than putting on the news. She crochets and stays in touch with old friends—her memories from that era are very clear; it’s newer memories that she has the most trouble with. She tries to stick to a routine to make her memory issues less of a problem.
Lifestyle changes may help you think more clearly. Some people see big improvements after making changes; others do not. It’s not known why some respond better than others.
Susan began eating better and drinking more water, but mostly, she says, she just had to wait out the chemobrain.
“There are [people who make changes] and are still troubled, and I think those are the ones who are more purely affected by the chemotherapy alone,” Dr. Asher says. “We take it on a patient-by-patient basis.”
How Long Will It Last?
Every person’s experience with chemobrain is different. Dr. Asher says most people see their problems slowly go away within 6 to 9 months of ending treatment. But some will continue to feel the effects longer than that. It is estimated that less than one-third of people who are treated for cancer have long-term cognitive changes.
Most of Carmen’s chemobrain symptoms disappeared after she finished taking tamoxifen. After Susan finished chemotherapy, she started to notice chemobrain less and less.
Within about a year of finishing treatment, her symptoms were mostly gone. She, like Carmen, wants people to know that what they’re feeling isn’t likely to last forever. Susan suggests embracing the power of positive thinking. She says, “worry is like a rocking chair. You rock and rock and you go nowhere.”
Unlike those with early-stage disease, whose treatment ends, having metastatic breast cancer means that Gail continues to have regular treatment. After more than 4 years of therapy and almost that much time living with chemobrain, she says the condition is more noticeable than ever. It’s a constant source of frustration but she has learned to accept it.
“I could cry over it at times, and I do when I’m alone. But if I cry through this illness, I’m not living and I’m wasting time,” she says.
Dr. Jim looks forward to a day when doctors better understand which cancer treatments are most likely to cause chemobrain and which people are most at risk. That way, doctors can do a better job of tailoring treatment to specific people’s needs.
Dr. Asher says he’s seen much more research being done on chemobrain in the last 5 to 7 years than was done in the decades before, and he expects it to continue.
“I’m grateful that this topic’s getting more attention,” Dr. Asher says. “It’s been a real source of distress for many of our patients for a long time.”