Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Cognitive issues related to cancer treatment might finally have some answers.
Cognitive impairment, chemobrain, chemo fog, cognitive dysfunction. Different words, same outcome: frustrated patients with muddled minds and frustrated clinicians with no answers. Diane Von Ah, assistant professor in the School of Nursing at Indiana University in Indianapolis, became interested in treatment- related cognitive impairment while working as a clinical nurse in the bone marrow transplantation field. For an article in the Clinical Journal of Oncology Nursing, she detailed the cognitive processes affected by this malady: attention and concentration, executive function, information processing speed, language, visual-spatial skill, psychomotor ability, learning, and memory.
Von Ah interviewed survivors of breast cancer as part of her doctoral dissertation, and reports they all said the same things: “I can’t remember. I am so frustrated when I can’t say what I want to. Forgive me for being so slow, but I have chemobrain. In social situations, I can’t remember people’s names. And, I can’t remember where I put things.”
What Von Ah recalls vividly from her interviews was the frequently repeated word frustration. She was also affected by the impact that cognitive impairment had on survivors’ lives and self esteem, which she believes has been overlooked by the medical community.
Early retirement, anger, depression and few solutions. Pharmacologic approaches have had spotty success because of the variety of causes of the disorder and medication side effects, leaving survivors with few options. Until now.
Creating New Brain Cells
Julie Barrow’s breast tumor was breaking through the skin when she began seven months of treatment in 2001 with dose-dense neoadjuvant chemotherapy (Cytoxan [cyclophosphamide], doxorubicin and 5-FU [fluorouracil]). While the treatment resulted in a complete pathological response, she found herself walking into rooms and not knowing why she was there. She says her brain shut down. She improved somewhat when treatment ended, and she tried to return to work managing a field office for a national marine sanctuary near her home in Half Moon Bay, Calif.
“I did community outreach and was part of a major planning effort,” she says. “If I had been doing it alone, I wouldn’t have been able to. It was the team that worked out what we were going to do.”
After receiving a second cancer diagnosis in 2005 in her other breast, Barrow was treated with carboplatin and paclitaxel every three weeks. She says she experienced cognitive dysfunction so dramatic, she couldn’t balance her checkbook, a task she performed easily prior to cancer treatment. She opted for medical retirement in 2006 at age 50.
Around the same time, Shelli Kesler, an assistant professor of psychiatry and behavioral sciences at Stanford University in Stanford, Calif., was researching cognitive and neurobiological effects of cancer and chemotherapy.
Exercise increases the number of cells, but many of these die after a few weeks. Cognitive training can drive those new cells to wire into the brain network and become functional.
In a study published in the August 2013 issue of Clinical Breast Cancer, Kesler and colleagues reported on survivors of breast cancer who were randomly assigned to complete a 48-session program over 12 weeks. The program used online cognitive training with Lumosity, a series of increasingly difficult games that challenge players’ memory, processing speed, cognitive flexibility and verbal fluency. (Kesler was not associated with the program, its developers or Lumos Labs, which facilitates the program.) The study found that participants experienced improved cognitive flexibility, verbal fluency and processing speed. The study was the second that Kesler conducted related to online cognitive training. The first, published in January 2011 in the journal Brain Injury, studied pediatric leukemia and survivors of brain cancer. The results of that study also showed that a program of computerized cognitive exercises might improve executive and memory skills.
Barrow, a participant in the breast cancer study, says the training translated into her daily tasks.
“I feel more confident with things like the checkbook and numbers, and now I work three days a week for California State Parks, where I manage about 40 volunteers,” she says.
Kesler says cognitive failure could lead to stress and be worsened by depression. Building on her cognitive training study, she began to investigate adding physical exercise, stress management and compensatory strategies, such as using a day planner and making lists. “Both physical and cognitive activity result in new brain cells in the hippocampus, an area important for memory, but they do it in different ways,” she explains. “Exercise increases the number of cells, but many of these die after a few weeks. Cognitive training can drive those new cells to wire into the brain network and become functional.”
In a similar investigation, Von Ah combined memory training from the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) study with processing speed training through a program called InSight (now a part of BrainHQ) from Posit Science. It showed improvement in immediate and delayed memory performance, as well as processing speed. (Both Posit Science and Lumos Labs offer varying levels of membership for monthly and annual fees.)
A Cognitive Behavioral Approach
“We can’t stop the memory failure,” says Robert J. Ferguson, a clinical psychologist in behavioral and rehabilitation medicine at Eastern Maine Medical Center in Bangor, Maine. But, he adds, survivors can learn management skills. Different from rehabilitation, which works on building new circuitry in the brain, he says his cognitive-behavioral training teaches a set of compensatory strategies, as well as stress management, including relaxation and other mastery skills, so survivors have the confidence to go into situations where they might be at risk of cognitive challenges.
Identifying those situations is one technique Ferguson used in a study of Memory and Attention Adaptation Training (MAAT), which involved 40 survivors of breast cancer. The participants, who were at least 18 months post-treatment, learned about memory and attention; self-awareness; self-regulation, which emphasized arousal reduction through relaxation training, activity scheduling and pacing; and cognitive compensation.
Participants kept a daily record of memory failures, which Ferguson says helped them identify environmental factors, such as noise, and internal factors, such as hunger or fatigue, that could affect their ability to store information in memory. They were also given tools, such as verbally rehearsing and visualization, to compensate for the verbal part of the brain that might have been affected by cancer treatment. “We want them to think less catastrophically about memory failures and think more creatively to adapt to and overcome problems,” Ferguson says.
Shannon Byers, a research and development lab manager in Lamoine, Maine, found herself struggling with cognitive dysfunction after treatment for stage 1 breast cancer when she was 34. She was treated with doxorubicin, Cytoxan (cyclophosphamide) and paclitaxel after undergoing a lumpectomy and radiation. She also took Herceptin (trastuzumab) for a year and tamoxifen for five.
“Cancer was behind me, but I was still struggling with words that had always been there and now were gone,” says Byers, now 38. “Even my husband noticed. He said he didn’t think I was listening because he would tell me things and I would forget.”
Byers found Ferguson’s rapid relaxation techniques to be particularly helpful. “Every time I ran into a word or name I couldn’t remember, I would relax, and almost every time, the word would pop into my mind,” she says. That, and decatastrophizing, Byers says, helped most. “When I couldn’t remember, instead of getting frustrated, I just told myself it didn’t matter, and the word came to me.”
Study results showed that compared with the control group, MAAT participants had improved spiritual well-being as measured on a quality of life scale and better verbal memory, but there was little difference in the self-report of daily cognitive issues.
Ferguson says that while MAAT has been researched primarily with survivors of breast cancer, it is a cognitive-behavioral approach that can be applied to any problem producing mild to moderate cognitive dysfunction and failure of daily tasks requiring memory.
“MAAT has been used successfully with patients who have cognitive dysfunction due to treatment of head and neck cancers, ovarian cancers, and in early stages of even aggressive brain tumors, such as glioblastoma multiforme,” he says. He cautions, however, that more research on MAAT effectiveness is needed in these groups.
Kesler and other researchers acknowledge that more study is needed in these areas and on which drugs might cause chemobrain, as well as which patients might be more susceptible to the condition and how to protect the brain during cancer treatment.
For Barrow there has already been success, because these studies show that chemobrain is real. “I will never be fully rid of it,” she says. “My brain may be taking a scenic route to process things, but there are things I can do to manage it. That gets rid of a lot of anxiety for me; I can relax and enjoy the ride.”