There are many reasons why shame may be experienced during treatment for breast cancer. Shame about the diagnosis, about how a lump was found (or not found) can be experienced. Shame about risk factors such as alcohol intake, hormonal factors and breastfeeding may play a part. Shame in revealing the naked body for physical examination, the scrutiny of a surgeon’s eye and being photographed can prompt feelings of shame. Patients feeling devastated about hair loss or the loss of a breast and wanting to feel whole may feel shame when survival may be the only focus of clinicians. These experiences may be unsurprising and may even be an ‘expected’ part of treatment given the intimate nature of breast cancer. What is not expected is further harm caused by the words and actions of health professionals caring for people with breast cancer.
Our research explored experiences of shame related to clinical encounters for breast cancer. It was conducted in Australia by health professionals in partnership with patients with a lived experienced of breast cancer. We invited members of the Breast Cancer Network Australia (BCNA, the peak consumer representative and advocacy group) to share a story of shame related to treatment. Responses were submitted anonymously through an online survey portal. Stories of shame related to clinical encounters were submitted by 38 participants. The stories were analysed and five themes emerged. These are described below with sample quotes.
“… I had to lie there exposing both breasts… unable to move for about an hour. Two male technicians moved, measured, photographed, studied and tattooed me…. Every time I look at the tattoo in the middle of my chest (which I hate with almost irrational intensity) I feel that humiliation all over again. I also think a lot about the photos – who saw them, how are they stored, what happened to them when I finished radiation?”
“I put on a substantial amount of weight… I was constantly anxious about seeing my surgeon as he would say things such as ‘It’s not the drugs it’s what you put in your mouth…’ ‘That’s not residual seroma it’s the fat you came in with…’ ’”
“The surgeon said words to the effect… ‘l could have bet money on it that it [the cancer] would have spread’. Not ‘l have wonderful news, you must be so relieved’ etc. Yet, for some inexplicable reason his arrogance, and lack of empathy made me initially feel shame. Like l had failed him, by not meeting his expectations.”
“When the doctor pointed out my lump. I was ashamed I hadn’t found it myself.”
“I lost all my fingernails and toenails and was not able to get any guidance on the likelihood of them growing back. I was made to feel that I was not doing enough to protect them, although it was all due to the chemotherapy.”
“I had radiation burns under my arm and the skin just sloughed off. It was very scary. I had to have it dressed every day by the nurses, who made obvious to me that they felt it was extra work for them.”
“He then told me that he could see no reason why I would want to do this [mastectomy and reconstruction] as the tumour was small. I said that this is what I felt was the right decision for me and that I thought I had a choice in the matter. He then made me feel a lot of shame by asking me who did I think I was “Angelina Jolie”?”
These stories give a powerful insight into the experiences of patients during cancer treatment. It is important for health professionals to be aware of the situations and conversations that may prompt experiences of shame in their patients. The findings from this research will be used to raise awareness among health professionals and develop training to promote shame-sensitive practice.
Works cited
Author
A/Prof Meagan Brennan, Breast Physician and Researcher. Westmead Breast Cancer Institute, Westmead Hospital, Sydney and The University of Sydney Australia.
Meagan.brennan1@health.nsw.gov.au
