Living with cognitive changes following completion of cancer treatment

Recently, a number of large surveys have reported that cancer survivors experience myriad physical, emotional, and practical changes following the completion of their cancer treatment (Brug et al., 2015; Cancer Control Queensland, 2015; Lerro et al, 2012; Li et al., 2019; Moslassiotis et al., 2017; National Health Services, 2015). Such changes can have a profound impact on the daily lives of the survivors. Across these surveys, the types of changes survivors report as remarkably similar include physical limitations, mood swings, fear of recurrence, return to work challenges, and financial burdens. It is important for oncology nurses to know about the nature of the impact of these changes on the lives of cancer survivors, as a basis for their assessment and efforts to improve the experience of survivors.

The recent Canadian Transitions Study (Fitch et al., 2019) provided an opportunity to explore the needs of cancer survivors and gain a deeper understanding of the impact changes could have one to three years following the completion of treatment. One such change described by the responding survivors was cognitive change. This brief communication will present the perspectives of the survivors about living with this consequence of cancer treatment, as reported in the Transition Study and the implications for oncology nursing practice.

METHODS

The full description of the Transition Study methods is presented elsewhere (Fitch et al., 2019). In brief, a survey was distributed to a randomly selected sample of 40,790 cancer survivors from across 10 Canadian provinces. The sample included adult survivors (aged 30+) of breast, prostate, colorectal and melanoma diseases with no metastatic spread, and selected hematological cancers; and adolescents and young adults (AYA, 18 to 29 years) with all non-metastatic cancer types except testes, where metastatic disease was included. Ethical approval was given by the respective ethical boards of the 10 provincial cancer agencies that disseminated the survey.

Several survey questions asked respondents to indicate changes they experienced following completion of their treatment and write comments about these changes. For the purposes of this brief communication, only the responses and comments concerning cognitive changes are presented. Frequency counts were calculated for the numerical data and content analysis was conducted for the written open-ended comments (Hsiu-Fang & Shannon, 2005).

RESULTS

The 13,258 respondents who completed the survey were predominantly adults aged 30+ years of age (97%) and 65% were 65 years of age or older. Fiftyone percent of the respondents were female and 77% had not experienced metastatic disease.

Thirty-nine percent of the respondents indicated they had a concern about changes in concentration or memory. Of those, 21% had a ‘big’ concern and 22% had a ‘moderate’ concern. Only 27% of those with a concern sought help for their concern and of those, 48% experienced difficulty in finding help or did not receive it.

Table 1.

Survey respondents experiencing cognitive changes

Indication	Number of respondents
Number of respondents who answered the question	11,877
Number of respondents who indicated a concern (big, moderate, small) about changes in concentration or memory	4,593
Number of respondents who indicated a ‘big’ concern	970
Number of respondents who indicated a ‘moderate’ concern	1,627
Number of respondents who sought help for their concern	1,188
Number of respondents who found it hard/very hard to find help or did not find help for their concern	564

Analysis of the written comments (see Table 2 for illustrative quotes) revealed survivors had many ways of talking about cognitive changes they had experienced, but most frequently used the terms ‘chemo brain’ or ‘chemo fog’. The most frequent description of what they experienced included memory loss (particularly short-term) and inability to concentrate or focus.

Table 2.

Illustrative Quotes: Cognitive changes were a major concern for some survivors

Words used to described cognitive changes Chemo brain, chemo fog, forgetfulness, memory loss/problems, forgetting, poor/difficulty concentration, fogginess, mental struggles, low attention span, difficulty focusing, fuzzy head, lightheaded, slow mental responses, confusion, brain damage, neurological problems, cognitive function

How were the changes experienced Being forgetful (brain fog still attacking me) changes to concentrate/memory is weak. Q37 Man 1448 Have a difficult time of concentrating on more than one thing at a time. Q33 BC 2100 Had a hard time remembering everyday things… trying to make sense of what was happening around me. Q33 BC 2108 My mental ability – I still don’t feel as ‘sharp’ as I used to and my memory and concentration is poor. Q33 Alb 442 Lack of ability to retain information or concentrate. Q37 BC 1739

Expected or not/told or not I experienced neurological problems, which I wasn’t expecting or told could or would happen. Q33 NS 1290 Working was a major concern – chemo brain was not communicated to me and full interaction with Tomoxifen. Q33 Alb 34 I was warned about chemo brain and was not overly stressed because of that warning. Q37 Man 1506 At first I was having some memory trouble. It was explained by the oncologist that it was normal and most of my memory troubles would disappear in time, after my treatments were completed and they did. Q47 Alb 594

What is it My family thought I had chemo brain – whatever that is? Q33 Sask 166 My memory is the worst challenge for me in general and I still struggle with that – they call it chemo brain, but honestly it seems like brain damage to me when you can’t remember anything short term. Q33 Sask 312

What causes it I had brain function disability due to the chemo – brain felt foggy and it took a while to regain my clear thinking. Q33 NS 2301 I really found my memory to be affected with the 2 surgeries and maybe the chemo and radiation played a part as well. Q57 Nfld 151 I was forgetful and foggy for the first months, which was especially difficult at work. It might have been from the anesthesia, the shock of being diagnosed with cancer, surgery, it all happened so quickly and a lot to process. Q33 Sask 206 Find the memory is slower (may be getting older – LOL) – think of one thing and say something else. Q37 Ont 221 My stamina is not as good and my brain function is somewhat slower. I have not been able to return to work. These may be related to my entering menopause. Q33 BC 889 I believe my memory is becoming more of an issue the longer I am on Tamoxifen. Q37 Sask 264 My concern was fatigue and memory and concentration. Dr. said the pill I take will cause it. It’s terrible. And some could be my age. Q37 Sask 362

Intensity varied Memory loss to a degree. Q37 NS 1026 Extreme fatigue. Mental fog. It delayed my returning to work. Q33 NS 1248 Severe decline in my mental and physical abilities. Q33 NS 1655

Length of time lasting Memory, concentration, and confidence problems after three years [still a challenge]. Q37 BC 999 Cognitive function – immediately after up to one year. Q33 NS Seemed to have a loss of focus – took 6 months to a year to feel I could function totally. Q33 NS 1618 [the main challenge for me was] mostly memory – short term very bad. Improved a lot in year 1–2. Q33 Alb 2733

Impact throughout life Getting back to a new normal. Things have changed regarding my memory and attention span, so I’ve had to adapt my life to these changes. Q33 Man 1703 Poor concentration makes it hard to deal with things. Alb #33 826 My memory and concentration still suffers. I have tried a return to work for 8 months and could not bear it, and I’m off on disability again. All aspects of life have drastically changed. Q37 Man 563 Lack of mental ability to do anything meaningful. Q57 Alb 849 Hard to stay focused, which makes things take longer. Q57 Alb 1260

Impact on thoughts/mood/personality/emotions [treatment] Interferes with your brain… changes thoughts, moods… takes time to set that straight again. Q33 BC 268 Adjusting to the brain damage the chemo created – changes to personality and memory and the severe lack of mental health help. Q33 BC 659 No mental or physical capacity – fuzzy thinking, low energy, emotional changes, mood changes, menopausal. Q57 NB 836 Frustration with concentration issues. Q47 Alb 725 Frustration not being able to do what I used to be able to and physical effort, job placement ability. Q47 Alb 1964

Impact on confidence Mental – still a struggle as not as clear or confident. Q33 Sask 350 Not as sharp, memory, concentration and lack of confidence. Q47 Alb 207

Impact on fears My biggest problem is the feeling maybe I have dementia. Q37 BC 266 Fear that my mind was slipping, that I was unable to learn as I once did, and that I was becoming obsessive. Q47 Alb 111

Impact on driving When I started my Tamoxifen, I felt like I’m in a dream and could not function normally for the first three months. Simple tasks like driving seemed to overwhelm me because I had hard time to concentrate. At times, I needed my teenage daughter to watch the traffic for me while I was driving. After three months on the pills, my body slowly adapted to the chemical changes. Some days, I still feel my concentration and memory are worse than other days, but it has not been affecting my driving. Q33 Man 695 The effects of Tamoxifen – having a hard time focusing, driving was very challenging, and having a hard time remembering things including taking the Tamoxifen every day. Q33 Man 1609 On a regular basis about 4 months after all treatment was completed I began having difficulty focusing and felt like “I was next to myself”, so much so that I did not drive and moved slowly. The oncologist said it sounded like ‘chemo fog’. But it occurred well after treatment was completed. It still occurs, but much less frequently. Q37 NB 529

Impact on thinking clearly/problem-solving Memory problems – unable to think clearly. Q33 BC 1988 Chemo brain – unable to solve problems. Q33 BC 1451 Loss of memory – unable to reason – mood swings – not recognizing family. Q37 BC 1183

Communication …affected my communication and ability to think clearly. Q37 BC 281 Memory problems since surgery and currently is still a challenge. Conversation and focusing on the topics was difficult due to my chemo brain. Words were incorrect at times (very embarrassing). Q57 Alb 1322

Work Work-related ability to remember and reason, as it applies to para-legal commercial real estate. Q33 NS 2294 The after effects of chemo made it hard to concentrate on my profession and strenuous mental exercise. Q33 Alb 306 Could not go back to work full time – chemo brain fog. Q33 NS 1406 Memory/tiredness when returning to work – so retired within one half year after surgery. Q33 Man 968 [My main challenge] was going back to my ability of teaching physics, remembering details of the work I used to do – memory affected. Q33 Alb 2062 Stress over forgetfulness and chemo fog made it difficult at work. Q47 Alb 1867 I am unemployed. I was hired as a medical clerk, but was let go after 10 months because “I wasn’t a good fit”. I know my short-term memory is nowhere near as sharp as it was, but I don’t know how much can be attributed to my cancer therapy or to the reality of getting older. Q37 BC 2013

Impact on school It was hard for me to adjust to my chemo ‘brain’ – the teachers were great, but somehow I felt they didn’t quite understand how amazing it was that I was capable of obtaining such high marks with such a slow brain. Q33 NB 32

Strategies – Getting help Chemo brain: this non-medical-recognized phenomenon left one depressed and dysfunctional. Some of the best support received after treatment was directed towards this: memory workshop, counselling in the cancer centre, and advice from my oncologist. Q33 BC 2122 Dealing with the after effects mentally was hardest. I just felt I had nowhere or no one to turn to. Q33 Alb 2809 Fatigue and concentration issues were taken very lightly and basically brushed aside as part of cancer recovery. Treated as no big deal. But it is a big deal. Q37 Ont 882

Strategies – Used on own I find it getting better for me, but I have worked with supplements, diet and overall getting myself to the best I can be now. I am physically different, energy levels are lower than before and my memory still isn’t the same. Q33 Sask 312 Loss of memory – I had people tell me about past events and eventually over a year, most of my long-term memory returned. Q33 BC 882

Need for teaching Every system is affected. Very little information + teaching regarding a completely different need to live with “New” normal to live with numb feel, leg pain, memory and all other physical changes. Use of teaching clinical nurse specialist would really help people cope and they should be available by phone. It is very difficult to phone + get answers from Ca Centre. Q37 BC 1715

Resources for patients/families Canadian Cancer Society. Coping with Cognitive Problems. http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/cognitive-problems British Columbia Cancer Agency. Memory, Thinking and Attention. http://www.bccancer.bc.ca/health-info/coping-with-cancer/managing-symptoms-side-effects/memory-thinking-attention-problems American Cancer Society. Changes in Mood or thinking. https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/changes-in-mood-or-thinking.html

Some of the survivors had been warned about the possibility of cognitive change while others had not. Those who had not been alerted to the possibility of cognitive change happening experienced worry and uncertainty about what was happening. Some indicated they worried they were experiencing dementia or Alzheimer’s.

Most survivors attributed the cognitive changes to their treatment (i.e., surgery, radiation, chemotherapy). In particular, Tamoxifen was named frequently. However, others also added that the shock of the diagnosis, so much happening at once, their age, and menopause could be contributing factors.

Descriptions of the experience revealed variation in the degree of change from “slight memory loss” to “memory was terrible”. For some, the changes were most pronounced immediately following the completion of treatment and gradually improved over the ensuing six months to a year. For others, the improvement took a longer period of time and may not have entirely returned to a pre-treatment level. In the words of one survivor, “Even today I feel I sometimes feel like my memory recovery is still on-going.”(Q33 NB 1010)

Survivors indicated how the cognitive changes had an impact on their ability to think, solve problems, remember even everyday details, and learn new information. Daily activities seemed to take long and confidence was undermined. Not being able to concentrate or recall details influenced their emotions and moods. Some found their communication suffered—not being able to find the right words, thinking one thing and saying something else, or forgetting to tell others about things. Some were not able to drive, as they were not able to handle the traffic or got lost in their neighbourhood. For some, they felt they had to adjust their whole way of living:

Getting back to a new normal. Things have changed regarding my memory and attention span, so I’ve had to adapt my life to these changes. (Q33 Man 1703)

The most significant impacts were felt by individuals who wanted to return to work. Some found they were not able to return while many experienced significant difficulty in doing so, especially as they first returned to the workplace. In the words of one survivor, “The return to work was extremely difficult. I had huge fatigue and concentration was very difficult.”(Q33 NB 655). Others shared the following:

Memory issues and being very tired were the main challenges. I went back to work 8 1/2 months after the surgery, (three months after my last treatment), slowly building back up to full-time. But I found that I was not capable of working full-time. I went down to four days a week and I find that is a more manageable work schedule for me. I still have issues with my memory and being tired. (Q33 BC 2284)

My memory and concentration still suffers. I have tried a return to work for 8 months and could not bear it, and I’m off on disability again. All aspects of my life have drastically changed. (Q37 Man 563)

Survivors used various words to describe the distress they experienced as a result of the cognitive changes – frustration and worry being the words used most frequently. The frustration emerged from not being able to do what they used to do while worry emerged from concerns about whether the changes were permanent or when they would improve. Not knowing where to turn for help or not obtaining assistance heightened both emotions.

IMPLICATIONS FOR ONCOLOGY NURSING PRACTICE

The Transitions Study provided an excellent opportunity to gain insight into what a large sample of survivors were confronting following the completion of their cancer treatment. With almost 40% of the survivors in this study reporting concerns about cognitive changes, this side effect is clearly one that should not be overlooked. Oncology nurses are in an excellent position to support patients and survivors with regards to this distressing side effect.

Based on the perspectives shared by the respondents, early teaching about side effects and preparation for the transition after treatment ought to alert the patient about the potential to experience cognitive changes. Baseline assessment and ongoing surveillance of cognitive status should be a routine part of nursing care so that any alterations are identified early. There are many standardized assessment tools that are easy to administer and score, such as the Montreal Cognitive Assessment Tool (http://www.memorylosstest.com/dl/moca-test-english-7-1.pdf). Self-assessment tools could be shared with the individual for use at home over the ensuing months following the completion of treatment if desired (https://eatspeakthink.com/online-assessment-cognition/). However, simply asking individuals whether they are noticing changes in their memory or concentration can be helpful, as a preliminary screen. Suggesting individuals keep a diary about what is happening may also be a helpful approach. The diary can be used as a reference in future conversations with individuals.

When an individual does experience cognitive change, basic instruction about strategies to handle the situation ought to be shared (see inset for resources for patients), as well as an indication of available resources for further support. Helping the person understand what is happening is important, as well as sharing the message that they do not have to feel alone or isolated in the experience. If the survivor is concerned about their situation, appropriate referral ought to be made for further assessment and/or counselling.