Brief Communication: Living with peripheral neuropathy following completion of cancer treatment

(1)

102 Volume 31, Issue 1, WInter 2021 • CanadIan onCology nursIng Journal reVue CanadIenne de soIns InfIrmIers en onCologIe

FEA TURES /Ch R o niq UES BrieF cOMMuNicAtiON

Living with peripheral neuropathy following completion of cancer treatment

by Margaret Fitch, RN, PhD

I started to realize the side effects of the treatment. The main challenge is that all fingers and toes are numbed with poor sense of cold and hot. My hands lost the ability to grasp and hold things. My feet feel I walk on air all the time. I have to learn how to balance myself in walking and learn how to grasp things with

hands. (#1362 Q33 MAN)

R

ecently, a number of large surveys have reported cancer survivors experience physical, emotional, and practical changes following completion of their cancer treatment (Burg et al., 2015; Cancer Control Queensland, 2015; Lerro et al., 2012; Li et al., 2019;

Moslassiotis et al., 2017; National Health Services, 2015). The types of changes survivors report are remarkably similar across these surveys and include physical limitations, mood swings, fear of recurrence, return to work challenges, and financial burdens. These changes can have a profound impact on the day- to-day lives of survivors. It is important for oncology nurses to know about 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 change described by the responding survivors was peripheral neuropathy.

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 resulting 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 ten Canadian provinces. The sample included adult survivors (aged 30+) of breast, prostate, colorectal and melanoma diseases with no metastatic spread, and selected hematological can- cers; 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 ten provincial cancer agencies that disseminated the survey.

Several survey questions asked respondents to indicate, on a predefined list, changes they experienced following completion of treatment. Opportunity to write comments about these changes was also available. For the purposes of this brief communication, only the responses and comments concerning peripheral neuropathy 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 com- pleted the survey were predominantly adults aged 30+ years of age (97%) and 65% were 65 years of age or older. Fifty- one percent of the respondents were female and 77% had not experienced metastatic disease.

Thirty-seven percent of the respondents indicated they had a concern about peripheral neuropathy. Of those, 25% had a ‘big’ concern and 34% had a ‘moderate’ concern. Fifty-two percent sought help for their concern, but of those, 38% experienced difficulty find- ing help or did not receive it.

AutHOr NOtes

Margaret I. Fitch, PhD, Professor (Adjunct), Bloomberg Faculty of Nursing, University of Toronto, 207 Chisholm Ave., Toronto, ON M4C 4V9

Marg.i.fitch@gmail.com

Table 1: Survey respondents reporting peripheral neuropathy following cancer treatment

Indication Number of

respondents

Number of respondents who answered the question 11868

Number of respondents who indicated a concern (big, moderate, small)

about peripheral neuropathy 4326

Number of respondents who indicated a ‘big’ concern about peripheral neuropathy 1087 Number of respondents who indicated a ‘moderate’ concern about

peripheral neuropathy 1481

Number of respondents who sought help for their concerns about peripheral

neuropathy 2230

Number of respondents who experienced difficulty obtaining help or did not

receive it for their peripheral neuropathy 877

(2)

103

Canadian OnCOlOgy nursing JOurnal • VOlume 31, issue 1, Winter 2021 reVue Canadienne de sOins infirmiers en OnCOlOgie

FEA TURES /Ch R o niq UES

Analysis of the written comments (see Table 2–4 for illustrative quotes) revealed survivors had experienced peripheral neuropathy as numbness, tingling and “pins and needles”. Their feet or hands, or both, could be affected with legs and arms involved in some cases. For some, the sensations were described as “mild discomfort” while others wrote about “severe” and “extreme”

neuropathy. There was also variation in the amount of time survivors indicated they had experienced the sensations.

Some reported a measure of improve- ment over six months to a year, while many were still experiencing difficulties on an ongoing basis. Words such as “permanent”, “chronic”, and “no cure for it” were used in describing their situation.

The impact of peripheral neuropathy was experienced during a range of everyday situations. In essence, peripheral neuropathy prevented survivors from engaging in activities that were important to them and were part of moving through each day. Walking, getting dressed, holding items with their hands, and doing chores around the house were challenging for many. Some household tasks took a long time to complete and required more concentra- tion than in the past (e.g., sewing, peel- ing potatoes). Work that involved typing or hobbies that required hand coordina- tion were also influenced. In terms of safety, individuals found they had to be particularly careful about hot and cold applications, cuts or injuries, and falls.

The neuropathy led to weak legs and balance issues for some. Learning and taking precautions to avoid difficulties required new learning and focus.

The emotional distress associated with peripheral neuropathy emerged often in relation to not being able to do what was necessary or important.

Individuals wrote about being frus- trated or, at times, depressed with their situation, especially if there was no anticipation that things would improve.

Some individuals were able to find support for their situation by talking with healthcare professionals and learning strategies for handling the peripheral neuropathy. Those who did not have the opportunity to engage in relevant

learning often expressed disappoint- ment and struggled with their day-to- day situations.

iMPlicAtiONs FOr ONcOlOGY NursiNG PrActice

The Transitions Study provided rich information about the nature of day-to- day living for Canadian cancer survivors following completion of treatment.

The large sample offered a wide range of perspectives regarding the changes

survivors experienced and the impact of those changes. With 37% of survivors reporting a concern about peripheral neuropathy, this side effect is one that should receive attention. Oncology nurses are in an ideal position to support survivors who are experiencing this side effect.

Based on the perspectives of survivors in this study, patients and survivors ought to be informed about the possi- bility of peripheral neuropathy during their initial teaching about side effects Table 2: Peripheral Neuropathy can be experienced as a major challenge for cancer survivors—illustrative quotes

Experienced Neuropathy

• I had nerve ending damage in my feet from the chemotherapy. I found the discomfort in my feet the most challenging experience. (#923 Q33 MAN)

• Neuropathy in hands, feet and legs, loss full right arm and hand. (#143 Q33 NB)

• I still have problems with my hands and feet with the damage done to the nerves. Some days are worse than others. (#894 Q33 NB)

Understanding cause of neuropathy

• I had incontinence and numbness and tingling, but would not connect those symptoms with my breast cancer, I just think its old age. (#1257 Q37 BC)

• Numbness of feet and hands resulting from chemotherapy drug. (#1421 Q33 ALB)

• I continue with severe foot nerve issues, but uncertain when or if the cancer treatment is the cause. (#818 Q37 BC)

variation in intensity

• Severe neuropathy and Cdif. (#631 Q33 NB)

• Have extreme neuropathy pain in feet, arm, and right side which, combined with severe arthritic pain, makes life very challenging. Numbness in fingers continues and difficult to pick up objects with fingertips. (#492 Q37 NB)

• There was really nothing that could be done for the peripheral neuropathy unfortunately.

It only causes minor discomfort, but it was difficult to do anything! It was a matter of time. Two years ago I could barely walk to the corner, now I can walk 10km without any difficulty. Some numbness and tingling remain but it is easy to live with. (#95 Q37 NB) variation in timing

• My feet and hands are numb, the hands are much better now, the feet still felt numb.

(#2785 Q33 BC)

• Weak legs - feet tingling + numb - still affecting me after three years. (#941 Q37 BC)

• Permanent nerve damage to feet from oxaliplatin chemo. This has never gone away. I sleep with an ice pack on my feet at night. (#2202 Q37 BC)

• Numbness with feet especially, hands were good after 2013-2014 treatments (came back), but dealing with this again. Hands somewhat affected again, but feet has not improved. (#722 Q37 BC)

• I experienced numbness in the bottom of my feet. My Oncologist said that it should lessen in time. After 1 year and 8 months of recovery, it is slowly getting better. I believe I have accepted it as the norm, so no longer notice it as much. (#720 Q37 BC)

Worry

• Got feeling back in most, but not all of my fingers and toes. And I get scared I might lose them, like they might have to be amputated or something… All my nails grew back after falling off, but not the same. (#901 Q37 NS)

(3)

104 Volume 31, Issue 1, WInter 2021 • CanadIan onCology nursIng Journal reVue CanadIenne de soIns InfIrmIers en onCologIe

FEA TURES /Ch R o niq UES

Table 3: Peripheral Neuropathy has an impact on daily life – illustrative quotes

limitations on everyday activities

• Peripheral neuropathy in my hands and feet have really limited me to do much of what I want to do. (#998 Q33 ALB)

• There is numbness in my fingers and toes that reduces my ability to accomplish tasks that were done without extra attention before.

(#1456 Q33 ALB)

• The ability to carry out every day chores at home, numbness in fingers & toes, pain, got physically & emotionally exhausted. (#2726 Q33

• Getting to do things I normally could do, but can’t due to neuropathy of feet and fingers. (#156 Q33 NB)BC) Walking

• Difficulty walking due to tingling in feet + always feel like “walking on rocks” Feet always feel frozen when it is cold outside. (#1321 Q37

• Could not walk properly. Had no feelings in hands and feet. Still don’t have proper feelings in hands, feet and breast area. (#472 Q33 MAN) SASK)

• My hands are still numb while I am sleeping, have to wear splints for nights; still have pain around my toes, can’t walk more than 40 mins.

Per day. If I walk more then it get severe pain my feet and have to lay down for a few hours. (#655 Q37 ALB)

• I have lost over 40% of the nerve ending in my legs and 10% in my hands, I can’t walk any great distance without my legs swelling, walking was something I used to enjoy greatly, which I can no longer do, a little more unsure of myself or my abilities, not sure if this is chemo related or just cancer related. (#1128 Q33 NB)

Dressing

• Peripheral neuropathy made it difficult to walk, dress, use my hands, very frustrating. I still have some lingering issues with this. Numbness and tingling in the feet and hands. (#120 Q33 NB)

Holding items in hands

• Numbness in fingers continues and difficult to pick up objects with fingertips. (#492 Q37 NB)

• I developed peripheral neuropathy of my feet & fingers. Made it very difficult to walk, hold things, etc. Effects my balance. (#364 Q33 SASK)

• Diagnosed with neuropathy in hands and feet. This causes daily challenges and frustrations. Haven’t peeled a potato in two years. Can’t get earrings or clasps closed, etc. (#327 Q33 NB)

Getting up from chairs

• Pain in my feet when walking, numbness in hands while sleeping and holding a phone for more than a minute, could not sleep at night was waking every few hours. Fatigue, could not stand up right away after sitting. (#1598 Q 33 ALB)

• My main one was probably: tingling in right hand, numbness in feet. General light to mid soreness in feet and legs made returning to an active life a bit more challenging. Hard to stand in the kitchen for a couple hours to cook and do the dishes. On some days, I would look like I am 90 years old trying to get up from a chair. Taxotere is just awful...as soon as I took my first dose I felt it in my nerves. (#668 Q33 NB)

Balance

• Balance - sometimes I ‘wobble’ like I’m going to fall even when standing still - could not get my fingers to cooperate (could not hold sewing needle), kept dropping things that I didn’t know were falling out of my hands - still experiencing above, but forcing myself to use my hands (e.g., learn to sew again). Now know that if I’m standing still I have to move my body or I will ‘wobble’ (#264 Q37 ONT)

• The neuropathy has effected my balance. It is a challenge to walk as I used to due to the neuropathy in my feet. The numbness in my hands also is a challenge. (#827 Q37 SASK)

• Neuropathy in my feet...causing me to fall. (#635 Q33 ONT) Work/hobbies

• Unexpected (long term?) chemo-induced peripheral neuropathy in hands and feet, leaving me challenged to walk, find unprickly socks, and touch objects, including type, which I need for my computer occupation. (#644 Q33 ONT)

• One of my hobby is playing guitar and there was no more feeling in my fingers tips! It took by about a year to get it back but I never quite.

(#580 Q37 ALB) Distress

• I’m either crying because the days are too hard for me, with the pain in my arm to my fingers giving me a hard time and the numbness and not being able to use my hand to using my hand. This all happened in one whole month not having my hand to do things is getting me depressed and then hearing that the pain clinic that I have been put on a waiting list that’s very hard to swallow right now. (#1044 Q37 MAN)

(4)

105

Canadian OnCOlOgy nursing JOurnal • VOlume 31, issue 1, Winter 2021 reVue Canadienne de sOins infirmiers en OnCOlOgie

FEA TURES /Ch R o niq UES

Table 4: Access to help for peripheral neuropathy—illustrative quotes Access to help

• Nerve ending in my feet - so painful could barely walk at times. No one gave me a straight answer to why this was happening and what was causing it. There were days all I could do was lay in bed and not move. Could not walk at all. (#838 Q37 MAN)

• I asked about peripheral neuropathy and got advice and information. My problem is not severe enough to require treatment. (#880 Q37

• Numbness in fingers thought to be “carpel tunnel.” I was told to use a wrist brace, but was not given exercises. I found out afterward I NB) should be doing exercises and I continue to do them on my own. (#1211 Q37 MAN)

• 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. (#1716 Q37 BC)

• Tingling of my feet @ night and my feet feeling cold @ night is a big concern. No one was concerned about that…was told if I have that for more than 2 years, it won’t go away. Not a helpful answer. Still have numbness in finger tips occasionally during day + night. (#849 Q37 MAN)

prior to treatment, as well as reminded at the point of preparation for transition to follow-up care. Ongoing moni- toring of survivors’ conditions ought to include checking whether an individual is experiencing neuropathy and, if so, its impact on their lives. Asking individuals about their situation provides an opening for the survivor to share their concerns.

Should an individual experience concern about peripheral neuropathy, oncology nurses can provide support by acknowledging the reality of the

concern and discussing what course of action the person would like to take.

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.

Sharing information about resources that are available (see insert for references to resources for patients) and what referrals are available is helpful.

Providing basic instruction about pre- vention of injury and strategies for per- forming daily activities should also be part of the nursing intervention.

reFereNces

Burg, M. A., Adorno, G., Lopez, E. D. et al.

(2015). Current unmet needs of cancer survivors: Analysis of open-ended responses to the American Cancer Society study of Cancer survivors II.

Cancer, 121, 623–630.

Cancer Control Queensland. (2016). Survivor Study Results. http://cancerqld.org.au/

research/viertel.cancer:research:centre/

community:engagement/survivor:study/

Fitch, M. I., Zomer, S., Lockwood, G., Louzado, C., Shaw-Moxam, R., &

Green, E. (2019). Experiences of adult cancer survivors in transition. Journal of Supportive Care in Cancer, 27, 2977–2986.

https://doi.org/10.1007/s00520-018-4605-3 Hsiu-Fang, H., & Shannon, S. (2005).

Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.

org/10.1177/1049732305276687

Lerro, C. C., Stein, K. D., Smith, T., & Virgo, K. S. (2012). A systematic review of large scale surveys of cancer survivors conducted in North America, 2000-2011.

J Cancer Survivorship, 6, 115–145. https://

doi.org/10.1007/s11764-012-0214-1

Li, Q., Lin, Y., Zhou, H., Xu, Y., & Xu, Y. (2019). Supportive care needs and associated factors among Chinese survivors: A cross-sectional study.

Support Care Cancer, 27(1), 287–295.

Molassiotis, A., Yates, P., Li, Q., So, W. K.

W., Pongthavornkamol, K., Pittayapan, P., Komatsu, H., Thandar, M., Yi, M., Titus Chacko, S., et al. (2017). Mapping unmet supportive care needs, quality of life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: Results from the international STEP study. Ann Oncol, 28(10), 2552–2558.

National Health Service. (2015). National Cancer Patient Experience Survey: 2015.

http://www.ncpes.co.uk/Index.php/

reports

resOurces FOr PAtieNts/FAMilies reGArdiNG

PeriPHerAl NeurOPAtHY

Canadian Cancer Society.

Peripheral Neuropathy. http://www.

cancer.ca/en/cancer-information/

diagnosis-and-treatment/

managing-side-effects/peripheral- nerve-damage-peripheral- neuropathy

British Columbia Cancer Agency. Peripheral Neuropathy.

http://www.bccancer.bc.ca/

health-info/coping-with-cancer/

managing-symptoms-side-effects/

nerve-damage

American Cancer Society.

Peripheral Neuropathy. https://

www.cancer.org/treatment/

treatments-and-side-effects/

physical-side-effects/peripheral- neuropathy.html