More on Chemo-brain

There are more than 14 million cancer survivors in the US with an additional one million diagnosed each year.  More than half of cancer patients receive chemotherapy, and of those, 20 to 80% will develop “chemo-brain” (also known as chemo-fog). The condition is characterized by a variety of cognitive deficits, including mental fogginess, impaired short-term memory, inability to multi-task, organize and plan, diminished motivation, challenges in initiating and following-through on tasks, impaired concentration, difficulty learning or retaining new tasks and skill sets, reduced processing speed, and struggles with word-finding and articulation – skills generally known as executive functioning, as well as, sleep disturbances, depression, and anxiety.  Fortunately, the majority of individuals affected will experience improvement in their symptoms over time.  But for up to 25% of those experiencing chemo-brain, symptoms may last for months, years or indefinitely.  For those whose symptoms are severe or who rely on executive functioning professionally or at home, chemo-brain can be devastating and debilitative.

The cause of chemo-brain is not well understood. The medical and scientific community have proposed a number of theories to explain the phenomenon, including patient anxiety and depression regarding a cancer diagnosis, fatigue, effects of surgery and anesthesia, anemia, medications used during and after cancer treatment, poor sleep, and genetic disposition. There is even evidence that patients were experiencing cognitive abnormalities prior to cancer, suggesting that the cancer itself contributed to cognitive challenges. The fact that the condition can occur across many types of cancers and types of chemotherapy regimens suggests at least some direct effect of the chemotherapy agents themselves.  While scientists have hypothesized several possibilities for what physical damage may be occurring, very little research has been conducted to explore those theories.

There is no definitive diagnosis for chemo-brain.  Patients report widely divergent symptoms, ranging from mild to debilitating.  As a result, studying the phenomenon has been problematic. Even though patients have been reporting cognitive challenges post-cancer treatment since the 1970s, emphasis of research has been on improving survivorship.  It has only been in the last decade that systematic research has been conducted into the phenomenon of chemo-brain. The majority of these studies have been conducted among breast cancer and lymphoma patients as these cancers have excellent treatment outcomes, resulting in large numbers of survivors.  Several studies have found that chemotherapy-treated patients perform worse on neurocognitive tests than non-exposed control subjects. Prospective studies that include pre-treatment baseline testing and closely matched controls, reveal subtle cognitive declines after chemotherapy exposure.  Further, imaging studies have confirmed diminished brain activity in the regions of the brain that control executive function in patients suffering from chemo-brain.   However, the research is alarmingly scarce and methodologies highly variable, leading to relatively limited progress in understanding the effects of cancer treatments on cognition.

There is at present no way to predict who will and who will not develop these symptoms, and for whom they will improve or persist.  Differences in patient perceptions, reporting, professions and use of executive functions, or factors present in an individual’s brain pre-treatment (e.g. cytokines, proteins) are a few of the theories under exploration.  Some studies point to differences in pre-treatment cognitive reserve - the brain’s ability to use existing and alternative neural networks in the presence of damage or disease-related insults.  Since the symptoms of chemo-brain mimic those of Alzheimer’s or other forms of dementia, they can create significant anxiety and fear.  However, in contrast to Alzheimer’s or other forms of dementia which are progressive, chemo-brain does reverse or improve for some and, at a minimum, reaches a plateau and remains constant. 

There are no preventive or curative treatments for chemo-brain.  Patients are frequently counseled to employ various behavioral modifications (e.g. use of appointment books, PDAs, sticky notes, to-do lists, etc.) to compensate for cognitive deficits.  Studies have shown some improvement in cognitive function among sufferers through participation in formal cognitive rehabilitation program, similar to those used with victims of traumatic brain injury. I personally sought the assistance of a wonderful Speech Language Pathologist who helped me to devise strategies to improve my most bothersome symptoms.  Studies of cognitive training interventions (e.g. apps such as Luminosity, Brain Health) have demonstrated improvements in processing speed and executive function.  The use of medications (Methylphenidate, Modafinil) to improve verbal learning, memory, and attention have been shown to have some success.  Non-pharmacologic measures that have been shown to provide some cognitive benefits include meditation, qigong, yoga, acupuncture, tai chi, exercise, biofeedback, and mindfulness.

Estimates of the prevalence of cognitive deficits in chemotherapy treated patients is highly variable, making it difficult to convince those outside the patient population of the reality of cognitive impairments. As scientific studies better define the difficulties stemming from chemo-brain, the medical community is increasingly acknowledging its existence. However, some members of the medical profession are still inclined to dismiss or downplay patients’ concerns about their symptoms.  For those patients whose symptoms are severe, the effects can pose a significant emotional and financial hardship to patients and their families, as evidenced by the following quotations from chemo-brain sufferers:

  • “My oncologist…discounted it, saying I’m fifty, the whole menopause thing. He patted me on the back, made me feel like I’m an idiot.” (Silverman)

  • “My ability to function in this vocation was being threatened, and it frightened me. It’s part of who I am.” (Clegg)

  • “I deal with issues of shame over this all over the place. Sometimes I feel humiliated, like a complete idiot.” (Clegg)

  • “I come across like I’m stupid, like I’m an airhead. I would like to change jobs, but what if I don’t remember new things?” (Silverman)

  • “When it happens, I die a million deaths and feel very dumb.” (Silverman)

  • “I’m not supporting my family anymore. You really feel kind of worthless.” (Silverman)

  • “While my boss, colleagues, and family didn’t really notice my mental lapses, I noticed!….. It would feel like my knees had been taken out from under me.” (Doroni)

If you or someone you know may be suffering from chemo-brain, discuss the matter with your healthcare team. If you are a healthcare provider, please take your patient’s concerns seriously.   Explore options for treating and overcoming symptoms.  Consider engaging the services of a life or executive coach to help deal with the impact of these symptoms can have on personal and professional life.  Most of all, be kind to yourself/your loved one/your patient.  Offer empathy and support.   The symptoms are real and they can be frustrating and scary. 

Debra Doroni is a certified executive and leadership coach. This article is for information purposes only and should not be seen as substitute for medical or therapeutic evaluation and advice.

Sources

Ahles T.A., & Saykin, A.J.  (2002). Breast cancer chemotherapy-related cognitive dysfunction. Clinical Breast Cancer, 3, S84-S90.

Boykoff, N., Moieni, M., & Subramanian, S.K. (2009). Confronting chemobrain:  An in-depth look at survivors’ reports of impact on work, social networks and health care response. Journal of Cancer Survivorship, 3, 223-232. doi: 10.1007/s11764-009-0098-x

Clegg, E. (2009). Chemobrain: How cancer therapies can affect your mind. Amherst: Prometheus Books.

DeSantis, C.E., Lin, C.C., Mariotto, A.B., Siegel, R.L., Stein, K.D., Kramer, J.L.,…& Jemal, A. (2014).  Cancer treatment and survivorship statistics. CA: A Cancer Journal for Clinicians, 64: 252–271. doi:10.3322/caac.21235

Ferguson, R.J., Ahles, T.A., Saykin, A.J., McDonald, B.C., Furstenberg, C.T., Cole, B.F, & Mott, L.A. (2007). Cognitive-behavioral management of chemotherapy-related cognitive change.  Psychooncology, 16, 772-777. doi: 10.1002/pon.1133

Frank, J.S.,  Vance, D.E., Triebel, K.L., Meneses, K.M..  (2015). Cognitive deficits in breast cancer survivors after chemotherapy and hormonal therapy. Journal of Neuroscience Nursing, 47, 302-312.  doi: 10.1097/JNN.0000000000000171

Kesler, S. (2013). Improving cognitive function after cancer. Publisher: Author.

Matsuda, T., Takayama T., Tashiro, M., Nakamura, Y., Ohashi, Y., & Shimozuma, K. (2005). Mild cognitive impairment after adjuvant chemotherapy in breast cancer patients – evaluation of appropriate research design and methodology to measure symptoms. Breast Cancer, 12, 279-287.  doi:  http://doi.org/10.2325/jbcs.12.279

Moore, H.C.F. (2014, September). An overview of chemotherapy-related cognitive dysfunction, or ‘chemobrain’. Oncology. Retrieved from: http://www.cancernetwork.com/oncology-journal/overview-chemotherapy-related-cognitive-dysfunction-or-chemobrain

Reuter-Lorenz, P.A., & Cimprich, B. (2013).  Cognitive function and breast cancer: promise and potential insights from functional brain imaging. Breast Cancer Research and Treatment, 137, 33-43. doi:10.1007/s10549-012-2266-3

 Scherling, C.S., & Smith, A. (2013). Opening up the window into “chemobrain”: A neuroimaging review Sensors, 13, 3169–3203. doi:  10.3390/s130303169

Silverman, D., & Davidson, I. (2009). Your brain after chemo. Cambridge: Da Capo Press.

Syrjala, K. (n.d.). Chemobrain. Fred Hutch.com. Retrieved from: https://www.fredhutch.org/en/treatment/survivorship/survival-strategies/chemobrain.html


Coaching for Chemo-brain

Chemo-brain (also known as chemo-fog) can be a challenging side effect for patients recovering from cancer treatment. Chemo-brain is characterized by a variety of changes in brain functions known as “executive functions”, including:

  • Impaired short-term memory,

  • Inability to multi-task, organize and plan,

  • Diminished motivation,

  • Challenges in initiating and following-through on tasks,

  • Impaired concentration,

  • Difficulty learning or retaining new tasks and skill sets,

  • Reduced processing speed and foggy thinking, and

  • Struggles with word-finding and articulation.

Chemo-brain is also associated with sleep disturbances, depression, and anxiety.   While for some people, the changes are subtle and not significantly life-altering, those whose symptoms are severe or those who rely heavily on executive functioning in their profession or at home may no longer be able to function in their professional and personal lives. Many are unable to work in their prior profession and must find a new career. Others are forced into disability or retirement, or are laid off.  For some, lack of acknowledgement from friends, family and the medical community negatively impacts their relationships and leads to social stigma and isolation. Many cancer patients who experience chemobrain report that the impairment significantly changed who they were, emotionally and mentally.  Sufferers feel anxiety, frustration, low self-esteem, and feelings of helplessness, resignation, dependence, and worthlessness. They are no longer able to recognize themselves and no longer identify with the person they were prior to treatment. For some, the loss of self, credibility, respect of others, self-esteem and employment leads to an identity crisis.  I know this because I have chemo-brain and all of this happened to me.

If you or someone you know may be suffering from chemo-brain, discuss the matter with your healthcare team. If you are a healthcare provider, please take your patient’s concerns seriously.   Be kind to yourself/your loved one/ your patient.  Offer empathy and support.   The symptoms are real and they can be frustrating and scary.   Explore medical and rehabilitative options for treating and overcoming symptoms.  As part of these options, consider engaging the services of a life or executive coach to help deal with the impact that chemo-brain (or illness in general) can have on personal and professional life.

There have been no formal scientific studies of the effect of coaching for individuals suffering from chemo-brain. However, studies have shown that coaching can be of benefit for those facing identity challenges that emerge during times of transition and crisis, including during acute or chronic illness. For some people experiencing chemo-brain, the changes can be devastating and debilitative. It can feel just like an illness.  They may begin to feel like different people due to disruption of their body, the need for adjustments to their social and professional lives, and stress on relationships. It can interfere with work, or in the extreme, may precipitate re-evaluation of career identity and goals. A person’s self-perceptions and answers to the question “who am I?” may no longer seem valid and they may need to define and come to terms with who they are now.  A disrupted sense of “fit” may motivate them to clarify their life goals and values, and align their personal and professional decisions and behaviors.  They search for a way to navigate their chemo-brain identity with family friends, and co-workers.

Studies of people facing a chronic illness have shown that coaching can be a useful approach to help people: 

  • Gain acceptance of their condition,

  • Understand and develop measures to cope with and adapt to symptoms,

  • Support their personal and professional well-being

  • Realize their value as a person and employee and develop confidence,

  • Incorporate the meaning of their illness, establish new expectations and goals, create new concepts of wholeness and revise future plans, and

  • Adjust the way they present themselves, communicate about their symptoms and ask for accommodation.

A coach provides validation and support. They help people to develop gratitude, flexibility and adaptability, focus on their strengths and capabilities, improve self-confidence, develop new behaviors to manage performance, health, and stress, and identify new possibilities.  Coaching can be a resource for organizations to retain employees who are facing an illness, including chemo-brain, and decrease the occurrence of their transitioning to disabled status.  Coaches support people in re-defining their purpose, meaning, and fulfillment and reprioritizing career and personal goals.

Debra Doroni is a certified executive and leadership coach. This article is for information purposes only and should not be seen as substitute for medical or therapeutic evaluation and advice.


References

Ahles T.A., & Saykin, A.J.  (2002). Breast cancer chemotherapy-related cognitive dysfunction. Clinical Breast Cancer, 3, S84-S90.

Beatty, J.E., & McGonagle, A.  (2016). Coaching employees with chronic illness: Supporting professional identities through biographical work. International Journal of Evidence Based Coaching and Mentoring, 14, 1-12.

Bilimoria, D. (n.d.). Women in Leadership: Inspiring Positive Change!. Case Western Reserve University. Retrieved from:  https://www.coursera.org/learn/women-in-leadership

Boykoff, N., Moieni, M., & Subramanian, S.K. (2009). Confronting chemobrain:  An in-depth look at survivors’ reports of impact on work, social networks and health care response. Journal of Cancer Survivorship, 3, 223-232. doi: 10.1007/s11764-009-0098-x

Cancer and Careers. (n.d.). What’s next: Cancer as inspiration for career changes. Retrieved from http://www.cancerandcareers.org/en/looking-for-work/exploring-your-options/cancer-as-inspiration-for-career-changes

Clegg, E. (2009). Chemobrain: How cancer therapies can affect your mind. Amherst: Prometheus Books.

Dilts, R., & Bacon, D. Coaching at the Identity Level. The NLP Institute of California, Retrieved from:  http://www.nlpca.com/DCweb/coachingattheidentitylevel.html

Ferguson, R.J., Ahles, T.A., Saykin, A.J., McDonald, B.C., Furstenberg, C.T., Cole, B.F, & Mott, L.A. (2007). Cognitive-behavioral management of chemotherapy-related cognitive change.  Psychooncology, 16, 772-777. doi: 10.1002/pon.1133

Galantino, L., Schmid, P., Milos, A., Leonard, S., Botis, S., Dagan, C.,…Mao, J. (n.d.). Longitudinal benefits of wellness coaching interventions for cancer survivors. International Journal of Interdisciplinary Social Sciences, 4, 41-58.

Guzzeau, G.  (2015, September). Closing counts: What we can learn from Jon Stewart. Gestalt International Studies Center Blog.  Retrieved from: http://www.gisc.org/giscblog/?p=344

Mathieson, C.M., & Stam, H.J. (1995). Renegotiating identity: cancer narratives. Sociology of Health and Illness, 17, 283-306. doi: 10.1111/1467-9566.ep10933316

Moore, H.C.F. (2014, September). An overview of chemotherapy-related cognitive dysfunction, or ‘chemobrain’. Oncology. Retrieved from: http://www.cancernetwork.com/oncology-journal/overview-chemotherapy-related-cognitive-dysfunction-or-chemobrain

Silverman, D., & Davidson, I. (2009). Your brain after chemo. Cambridge: Da Capo Press.

Syrjala, K. (n.d.). Chemobrain. Fred Hutch.com. Retrieved from: https://www.fredhutch.org/en/treatment/survivorship/survival-strategies/chemobrain.html

Taylor, M., & Crabb, S.  Coaching to help a client create a new identity. (n.d.). Dummies.com. Retrieved from:  http://www.dummies.com/business/human-resources/employee-relations/coaching-to-help-a-client-create-a-new-identity/