Asian woman on phone from KP Pathways newsletter for web

This blog is abstracted from an article in the Winter 2019 Pathways newsletter.

Have you heard the term Chemo Brain? Until the last decade, when women reported memory and thinking problems during or after being treated for breast cancer, they were often ignored. Now we know that cancer and cancer treatment can cause these changes and research is progressing on how to help people who have Chemo brain, also known as Cancer-related Cognitive Impairment (CRCI). We can take heart that most of us will recover our brain function and that there are things we can do to deal with memory/thinking problems.

 It is real & you are not alone

Perhaps the most important thing for some of us is to know that real, physical changes have taken place and that others have gone and are going through the same thing. For Karen (diagnosed at 39 years old when she had 3 children under age 9), memory issues started a couple of months after chemotherapy.

One day I was going somewhere in the car and suddenly was not sure if my one-year old son was in the car; I did not remember buckling him into the car seat. This was frightening for a Mom.

CRCI is often scary. It affects memory, decision-making, attention, and processing speed. Some breast cancer patients report problems beginning at diagnosis, possibly linked to physical symptoms, fatigue, and emotional distress or worry. One study found that women who received chemotherapy performed worse on memory tests than other breast cancer patients and healthy controls, and that their brains were working much harder.

Imaging studies suggest that the brain’s structure changes with cancer treatment, disrupting the organization in several areas and reducing the ability to process information. Hormone and targeted therapies can also cause cognitive problems. Knowing the cause of our CRCI can be a relief, but how do we deal with these changes?

Managing memory/thinking problems

CRCI may be caused by treatable conditions or by medication. Scientists are studying ways to recover memory and cognition after cancer. Some interventions help by managing fatigue, including healthy eating, good sleep, aerobic exercise, meditation/deep breathing, and stress reduction (check out Kaiser Permanente’s Cancer: Home Treatment for Fatigue).

For ongoing CRCI, there are things we can do to cope. Karen was frustrated with her memory changes. “I have slowed down and simplified,” she said. This is in line with CRCI advice:

  1. Allow more time to do things than you did in the past
  2. Avoid multi-tasking
  3. Reduce clutter and keep important things in a designated place (like your phone)
  4. Follow a routine
  5. Find ways to organize yourself – a checklist, notes, a calendar, smart phone apps or alarms, etc.

For Karen, an online calendar was invaluable.

I found that using Google calendar for every little thing helped.... I use reminders on the calendar for the day before and then the hour before.

Alarms and reminders are really useful for remembering when to take medications and to avoid missing medical and other appointments. They can also help to establish healthy habits, like setting a time for exercise and getting together with friends.

Getting support

The people in our lives are also critical for providing support and keeping our brains working. Karen’s family noticed cognitive changes and they were confused by it. However, it isn’t something that others can see—we may need to tell them what we are going through. “Friends don’t realize that memory loss is actually a thing,” Karen told us. Letting family and friends know that this is normal after cancer treatment and that it should get better with time can make both of you feel better! ASCO’s Cancer.net has tips for talking about these things with friends and family, including kids and teens.

For those of us with jobs when diagnosed with cancer, returning to work can pose challenges, but can also be a source of socializing and self-esteem. One survivor was supported by her employer and co-workers as she built back up to full-time. Some moms in Karen’s support group said that going back to work helped their memory. Another survivor said she could no longer handle two different computer systems and, luckily, was able to retire. For some, the loss of social interaction is as big a problem as the loss of income.

We can also meet new people for support and social interaction. Extra benefits: they don’t have any expectations about our thinking abilities and all of our stories will be new to them.

Keeping our brains active

Fortunately, more research is ongoing on how to help people who have had cancer cope with cognitive difficulties and improve our quality of life during and after cancer. As of 2014, only one type of program was found likely to be effective: cognitive training. Those studies involved repeating sets of structured problems or mental challenges and led to significant improvements in thinking flexibility and speed, and some improvement in memory.

Until more is known about the type or amount of training, we can try new hobbies, play games and solve puzzles as a fun way to engage and stimulate our brains! As Karen noted, we need to remind ourselves that this is our new normal and move forward with our memory or whatever other changes we are experiencing.

If you are concerned about your memory or thinking ability, talk to your health care provider/s.

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