Is Chemo Brain Real?

By Meredith Begley,

Tuesday, May 3, 2016

author finds help for chemo brain

Patients undergoing chemotherapy sometimes experience “chemo brain,” a frustrating ailment marked by cognitive changes that can sometimes mimic other conditions. MSK offers help via its Sillerman Center for Rehabilitation, where occupational therapists like Grace Chen help patients experiencing chemo brain to strengthen their memory.

  • Cancer treatments can affect memory, attention, and processing speed. Many survivors also report a decreased ability to multitask. These symptoms are often looped together as a condition called “chemo brain.”
  • Patients who have chemo brain can learn skills to improve their memory.
  • Most patients who experience chemo brain do not have persistent symptoms once their treatment is over.

Eight years after completing chemotherapy, Maya Gottfried started on another path to healing.

The 44-year-old writer from Beacon, New York, was successfully treated for stage III colorectal cancer at Memorial Sloan Kettering in 2008. In the years following an intensive course of chemotherapy, her body bounced back, but her memory was slow to catch up.

Maya noticed herself forgetting “little things that we do on a daily basis,” she says. She’d go out to run errands and forget to do half of them. She’d overlook tasks in her morning routine. She couldn’t remember to take her supplements. You wouldn’t know it by just talking with her, but she says she was struggling.

I didn't realize there was support. My nurse… told me about the therapy that was available. I thought it was a great idea.
Maya Gottfried

Those short-term memory troubles are hallmarks of what many refer to as “chemo brain,” the cognitive changes that most people experience in active treatment.

A Complex Condition

But chemo brain is tricky to diagnose because many of its symptoms — trouble concentrating and fatigue, to name two — mimic other conditions, like anxiety, insomnia, menopause, or simply normal aging. Doctors try to rule out other problems first.

“These issues tend to influence the same areas of cognitive function, memory, attention, and processing speed,” says Tim Ahles, a behavioral psychologist at MSK.

Chemotherapy contains chemicals that work to fight cancer, but since it courses throughout the body, it can affect healthy cells as well. That said, nobody knows why exactly chemo brain happens — and even the name itself is a bit of a misnomer.

“Everyone calls it chemo brain, but it’s probably a much more complex combination of surgery, chemo, radiation, and endocrine therapy all mixed together in one person,” Dr. Ahles says.

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Finding Support

Maya had heard of chemo brain but didn’t know if there were any steps that she could take once she started grappling with it.

Chemo brain is tricky to diagnose because many of its symptoms …mimic other conditions, like anxiety, insomnia, menopause, or simply normal aging.

“I didn’t realize there was support,” she says. “I told my nurse I was having issues, and she told me about the therapy that was available. I thought it was a great idea.”

Her nurse referred her to Grace Chen, an occupational therapist at MSK’s Sillerman Center for Rehabilitation. Occupational therapists help patients get back to the everyday tasks that they may have trouble with after cancer.

Occupational therapy for chemo brain is similar to physical therapy, except that therapists teach mental exercises to strengthen the mind instead of physical exercises to strengthen the body. Depending on the severity of the symptoms, Ms. Chen sees her patients anywhere from four to twelve weeks, asking them to bring in projects, schoolwork, and other items from their everyday life.

“We’re individualizing the therapy to each person,” she says.

Everyone calls it chemo brain, but it's probably a much more complex combination of surgery, chemo, radiation, and endocrine therapy all mixed together in one person.
Tim A. Ahles
Tim A. Ahles psychologist

Ms. Chen showed Maya strategies that would help with her memory, time management, and organization. They met once a week for five weeks, but as is the case with physical therapy, Maya spent a lot of time practicing her new skills well beyond her appointments.

“She taught me some really great tools, like how to organize a to-do list, visualize things so I would be more likely to remember them, and set up stations in my house so that a particular place would trigger remembering what I had to do there,” Maya recalls.

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Tools That Help Bridge the Gap

While many patients do not have lingering effects after completing chemotherapy, Maya’s case wasn’t unusual, Ms. Chen says.

“Sometimes patients may not notice some of the effects right away,” she says.

Managing Chemo Brain for Cancer Survivors
This information explains what chemo brain is and how you can manage it after cancer treatment.
Learn more

Most patients find that in time, their brainpower returns to its baseline normal, but experts estimate that 25 to 30 percent experience cognitive problems for one to two years or more after treatment ends. Maya considers herself “a little foggier” than she was before her cancer, but now she’s armed with tools that she says “have really helped to bridge the gap.”

She encourages other cancer patients to be gentle with themselves if they go through chemo brain — there’s hope on the other side. 

“You’ve been through a lot, and it may take a lot of time and patience to get back to where you were,” she says.

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It's been 3 years since my last chemotherapy treatment. I try to keep aware of everything around me, but sometimes just cannot keep my mind steady. I've slowed down my thinking and sometimes mix my words. Very upsetting! But I'm alive!

Dear Roseann, as you saw from this blog post, you are not alone in your experience. You may find it helpful to talk to your doctor about whether occupational therapy might be helpful for you. We hope the issues you have with memory and thinking improve over time. Thank you for your comments.

My daughter had a brain tumour 4 years ago and finished treatment 3 years ago. She still has problems with her short term memory and cognitive processing. She struggles at school and easily becomes frustrated. I hope that we see these symtons settle. I have read about cognitive fatigue is often a feature of brain injury/ cancer. I can certainly identity with this. We are very lucky however that she has made such good progress in terms of the cancer.

Dear Julia, we are sorry to hear about the side effects your daughter is experiencing. We hope she gets the support she needs and her symptoms improve over time . Thank you for your comments.

This is the first time that I've seen a professional mention that it is more than just chemo brain. I never had chemo but had 7 major and 13 minor surgeries for cancer and have the same memory issues. ALL the pharmaceuticals in my body have created this, none of them chemotherapy.

Dear Amy, we're sorry to hear that you have experienced this problem. We hope your symptoms improve over time. Thank you for sharing on our blog.

I received cutting-edge and probably life-saving treatment for breast cancer from my excellent team at University of Washington Medical Center in 1993. At that time, I was advised, in good faith and accordance with current understanding, that chemo agents did not cross the blood-brain barrier, so could not be responsible for the symptoms I was experiencing. For a time, I was convinced that it was likely related to the abrupt menopause I experienced at the age of 40, secondary to the chemo (which, incidentally, was anthracycline-based), and I still believe that these two conditions are, for all practical purposes, impossible to differentiate. And, whether a primary or a secondary symptom, insomnia has ruled my existence all the while. In any event, it was at least 5 years after treatment that I first heard the term "chemo brain" used. But there was little information, certainly no consensus as to whether or not it even existed, no diagnostic tests, and, in my experience, no healthcare professionals who were even familiar with the term, let alone offering any validation or assistance. I struggled every day for 14 years in my professional field, before succumbing to what I could only describe as “exhaustion”. My compensatory and adaptive behaviors were hard-won through trial and error and generally effective. But they couldn’t begin to make up for the very real deficits I was experiencing. By that time, research was beginning to catch up with me, eventually even coming to the realization that some women really were continuing to experience these very real difficulties many years after treatment. When at last the question of disability was unavoidable, however, I knew I was lacking even the most basic and essential element of a claim – a definitive diagnosis, by a qualified physician. Neither was available, in spite of an extensive workup with a neurologist, neuropsychologist, and a sleep specialist that yielded a record full of negative findings that served only to damn any possibility of benefits. Attorneys specializing in disability cases were not interested in a case that involved vague, subjective complaints that no one could measure or define. No disability pension for me. So, on top of everything else, the financial distress adds to the general sorry situation.

I offer this up primarily as a contrast to the hopeful, constructive, and compassionate approach you are describing. In spite of everything, I remain grateful for my treatment and for my survival, and I want to commend you for taking up this challenge. Dr. Ahles’ work has long informed my personal research on this subject, for which I am indebted. I continue to seek answers, but I can never underestimate how helpful it is even to find someone who is asking the right questions.

Maureen, we appreciate you sharing your difficult experience. Our goal is to see this become less of an issue for patients as the research in this area continues to evolve. We hope you ultimately find things that help alleviate your symptoms and appreciate your comments on our blog.

72 yrs. old, completed 6 chemo sessions at MSK in March of this year. going back from Mississippi in July for maybe 2 more. Am forgetting things. Is there more info on this chemo brain as I live so far away?

We are sorry that you are having memory issues as a result of your treatment. Our patient education materials offer some helpful information on how to manage chemo brain after treatment:….

More useful resources offering tips for coping with memory and cognitive issues due to cancer treatment can be found here:……
American Cancer Society:…

We hope this information is helpful. Thank you for reaching out to us.

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