Living with body image changes following completion of cancer treatment

I experienced some body image issues. I am very fortunate to still have my right breast, but two surgeries changed it so that it looked and felt different. Family and close friends didn’t understand and thought that I should be thankful for the positive outcome. I was extremely thankful and knew it could have been much worse, but the fact was, my body was different and I was having some trouble accepting it. As well, I was single and dating, so I struggled with the fact that a potential partner may not find my body attractive or desirable. (#127 Q33 NL)

Recently, a number of large surveys have reported that cancer survivors experience physical, emotional, and practical changes following the completion of their cancer treatment (Burg et al., 2015; Cancer Council Queensland, 2016; Lerro et al., 2012; Li et al., 2019; Molassiotis 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 how these changes impact 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 an understanding of the impact changes could have one to three years following the completion of treatment. One change described by the responding survivors was body image 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 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 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 on a pre-defined list, changes they experienced following completion of their treatment. Opportunity to write comments about these changes was also available. For the purposes of this brief communication, only the responses and comments concerning body image 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. 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 changes in body image. Of those with a concern, 24% had a ‘big’ concern and 31% had a ‘moderate’ concern. Only 20% of those with a concern sought help for this concern and of those, 38% experienced difficulty in finding help or did not receive it.

Table 1.

Survey respondents experiencing body image changes following cancer treatment

Indication	Number of respondents
Number of respondents who answered the question	12,093
Number of respondents who indicated a concern (big, moderate, small) about changes in body image	4,670
Number of respondents who indicated a ‘big’ concern about changes in body image	1,111
Number of respondents who indicated a ‘moderate’ concern about changes in body image	1,459
Number of respondents who sought help for their concerns about changes in body image	979
Number of respondents who found it hard/very hard to find help or did not find help for their concern about body image changes	369

Analysis of the written comments (see Tables 2–4 for illustrative quotes) revealed survivors experienced challenges stemming from various physical changes after treatment including loss of breast, loss of testicle, surgical scars, hair loss, finger and toe nail changes, weight changes, looking older, and having an ostomy. They described how the changes in their bodies made them feel “ugly”, “disfigured”, or “like a freak”. Some struggled to look at the surgical sites or to touch that part of their body.

Table 2.

Illustrative Quotes: Changes in body image were a challenge for some survivors

Types of body image changes
Hair Loss Loss of my hair - it hasn’t returned to the way it was before treatment - creates anxiety and worry over my appearance (#243 Q47 ALB) Because on the surgery on my scalp I have 2 scars (1 larger and 1 smaller) that I have had hair loss in that area. I am sometimes self-conscious of this. This has had an impact on my day-to-day life (#22 Q37 NS)
Nail changes Toenails are thick and brittle (#314 Q37 NB) …and nails are brittle and splitting (#137 Q37 NB)
Ostomy/colostomy Having a temporary ostomy and not having useful people to talk to about the body image issues (#1088 Q33 ONT)
Scars Extensive scarring, which embarrasses me. I will no longer remove my shirt for public swimming, as an example. (#97 Q37 NS) The scars bother me very much. I am very self-conscious of my back area now (#504 Q37 NS)
Weight gain/loss My body size and shape changed. I look in the mirror and I see my sister who was always bigger than me. I was always a small frame, petite shape, now I am a medium frame not sure due to menopause or stem cells? (#1518 Q37 BC) Body image, gained 100 lbs - hated my body - sex life was non-existent. A lot of B.S. in some info given to me (#373 Q33 NB) My change in body image was a loss of 33 pounds and I no longer had diabetes! (#313 Q37 MAN)
Looking older My physical appearance has dramatically changed how I look and feel. It’s like I aged so rapidly in past few years and it is definitely affecting my emotional state, as well (#901 Q37 NS) Waiting for my hair to be normal and thinking I looked older (246 Q33 ALB)
Different size breasts Different sizes of my breasts was difficult to digest (#1336 Q33 NS) Having to live with one breast and trying to carry on when you don’t feel whole (#1422 Q33 NS)

Table 3.

Quotes illustrating the impact of body image changes

Impact of body image changes
Emotional distress Emotional distress at the change in physical appearance due to mastectomy and subsequent reconstruction (#1607 Q37 BC) Anger I can no longer have children and I don’t have breasts. It sucks. My reconstruction, although is good, is warped and I look mutilated (#91 Q47 ALB)
Hard looking at the surgical area Elderly and alone - was told 3 days post op I could remove surgical dressing (scared) had no idea what to expect, didn’t know how radical my surgery was, was unprepared as to how my chest would look (#1465 Q33 NS) I could not look or touch either the breast or my implant (#832 Q47 NS)
Feel Unattractive/undesirable Feelings of poor self-esteem, feel unattractive (#443 Q37 MAN) Unattractive, Undesirable (#992 Q37 MAN)
Feeling deformed/disfigured Other physical concerns I experienced were loss of hair that never came back. Scars from the surgery of mastectomy. Deformed body, one breast missing. My eyesight was also affected (#263 Q37 NB) I am not someone excessively concerned about my physical (in this case facial) appearance. But the residual effect of the residents’ surgery did leave me with permanent change/disfiguration of my forehead/eyebrow (#457 Q37 NS)
Feeling less of a woman Silly as it may be, but I was concerned about my hair loss, but it did come back but a lot thinner and also felt less of a woman (#114 Q47 NL) Emotionally after losing my breast I don’t feel like a woman, or at least the way I used to feel (#1053 Q47 NS)
Feeling less of a man The hernia changed my appearance, it is so big I look like I’m pregnant (#549 Q47 NB) Impotency + “man-boobs” (#1597 Q47 BC) Self-esteem/image disturbances and sexual self, cancer r/t, having 1 testicle (#1427 Q33 ONT) More womanly appearance, but dealing with reality (#674 Q47 BC)
Self-conscious/people staring I felt very self-conscious about my physical appearance when showering at the gym (#712 Q47 ALB) I was always worried people were staring at me because I now have no breast. That was difficult for me (#1487 Q47 BC)
Adjusting to/learning to live with/accepting ‘new’ body Adjusting to my ‘altered’ appearance following surgery (#1233 Q33 NS) Learning to live without my breast (#153 Q33 NL) Losing the breasts I was born with was a challenge and trying to accept my “new breasts” is still a challenge (#1353 Q37 BC) My main challenge after my treatment is getting to like myself and my body again. This has been very hard (#65 Q33 MAN)
Dressing in new ways/clothes not looking right Trying to dress in ways to try and cover myself (double mastectomy) so people wouldn’t stare at me (#148 Q33 NL) Misshaped breast makes bras difficult to make clothing look attractive (#246 Q37 BC) Felt my clothing did not look good on me anymore (#186 Q47 PEI)
Relationships Feeling ugly; nothing is the same; can’t get close with partner (#182 Q47 ALB) My husband has never seen my body since! It’s very depressing (#786 Q33 NB) Loss of confidence due to body image. Afraid of close relationships (#161 Q47 NL)
Loss of confidence I feel after the lumpectomy that “part of me” is missing. Sometimes lacking the confidence that once was in body image (#641 Q37 ONT) Facing the public w/ confidence after a mastectomy (#905 Q33 ALB)
Regret I had removal of my R breast. My regret was not having my L breast removed. More for cosmetic reasons than recurring CA (#654 Q 37 ONT) I wish I’d never opted for a mastectomy! (#845 Q37 BC)

Table 4.

Quotes illustrating access to help

Access to help I had a hard time emotionally post treatment. I suffered from depression, body image problems, and sexual dysfunction All of which were not really addressed post treatment, e.g., what to expect, how to handle it, where to go for help (#86 Q33 NL) It bothered me to be flat chested, but was able to discuss it with my Dr. & family & adjusted to it well (#607 Q47 NS) Not a challenge, but a concern about the way my breast became very hard, dark pink colored & shrank. My surgeon put my fears to rest (#1569 Q33 MAN) I grieved the loss of my breast for about a month or more, was able to get through with help from family & friends (#925 Q47 NS)

In turn, the sense of disfigurement or having an “altered body” had an impact on various aspects of their daily lives, including their sense of self (who they were now in comparison to who they were before cancer treatment), their emotional responses, and relationships (both at work and at home), Some expressed feeling a sense of loss and grieving the body part that was gone. Others discovered the bodily change resulted in women feeling “unfeminine” and “less like a woman” while men expressed feeling “less manly”. Some described losing their sense of confidence in being around others now that they had scars or only one breast. Others wrote about how they felt self-conscious or worried that people were staring at them.

Having to wear a wig or having to wear a breast prosthesis was challenging for some survivors. Finding a prosthesis that fit properly made a difference in how clothes looked and felt. Women indicated they found their clothes often did not fit properly nor look correct with only one breast.

Women who wrote about reconstruction described frustration over lengthy waiting periods for the surgery. Others expressed concern over the end result, indicating dissatisfaction about the look of the reconstructed breast. Others wrote about the regret they felt not having both breasts removed in the beginning. Living with only one breast left them with issues of back pain and feeling unbalanced.

Survivors described adjusting to their new body and learning to accept it was a major challenge. Some received help from family and friends while others indicated they received help through discussion with a healthcare professional. However, not all were able to access assistance. Some expressed disappointment that their family members did not seem to understand what they were going through. Others thought there ought to be more teaching and preparation for handling the changes in body image from health professionals.

IMPLICATIONS FOR ONCOLOGY NURSING PRACTICE

The Transitions Study provided a wonderful opportunity to learn from a large sample of cancer survivors about their experiences and gain an appreciation for the types of changes they were handling following the completion of treatment. With 37% of survivors reporting concerns regarding body image changes, this consequence of cancer treatment should be a focus in the care of survivors. Oncology nurses are in an ideal position to support patients and survivors with regards to this challenging aftermath of being treated for cancer.

Based on the views shared by the respondents in the study, patients and survivors ought to be alerted to the possibility of body image changes during their teaching about side effects prior to treatment and during preparation for the transition following cancer treatment. Ongoing monitoring of patient status ought to include asking whether the individual is experiencing body image changes or if changes are a source of concern for the person. Asking about body image changes can be a signal to the person that it is alright to share their concerns.

RESOURCES FOR PATIENTS AND FAMILIES.

American Cancer Society. Hair loss. https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/hair-loss.html

BC Cancer. Hair Loss and Appearance. http://www.bccancer.bc.ca/health-info/coping-with-cancer/managing-symptoms-side-effects/hair-loss-appearance-changes

Canadian Cancer Society. Coping with body image and self-esteem issues. http://www.cancer.ca/en/cancer-information/living-with-cancer/your-emotions-and-cancer/coping-with-body-image-and-self-esteem/?region=sk

Should an individual experience concern about body image changes, oncology nurses can provide support by acknowledging the reality of the concern and discussing what course of action the person would like to take given the options that are available. 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 resources for patients) or what referrals for counselling are possible would also be useful.