I Looked at the Place Where My Breast Used to Be...

Annette Gough

And the old men march slowly, old bones stiff and sore,
They’re tired old heroes of a forgotten war,
And the young people ask ‘What are they marching for?’
And I ask myself the same question.

Eric Bogle (1972) ‘And the band played Waltzing Matilda’

As a baby boomer and opponent of Australia’s involvement in the Vietnam War, Eric Bogle’s elegy for Anzac veterans captured many of my ambiguous feelings about engaging in warfare. I asked myself if judging battles in terms of their futility and/or utility affected how we respond to their wounded and maimed survivors.

 

And when our ship pulled into Circular Quay
I looked at the place where my legs used to be
And thanked Christ there was no one there waiting for me
To grieve and to mourn and to pity.

I haven’t consciously listened to Bogle’s song for several years, but these particular lines came to me forcefully last August when I looked at the place where my breast used to be. It’s a wound that marks the course of the cancer war on my body, and although I don’t want my battle to be understood as heroic, neither do I want it to be judged as futile. Hence this story. Bogle’s words still come to me whenever I catch a glimpse of my reconstructed cleavage in the mirror when I am wearing a nightie. My physical appearance is unchanged when I’m wearing a bra—the surgeon did a reasonable job of re-engineering me for public appearances—but I still see the hollow in my neckline that traces the place where the expanded chest muscle begins, and my prosthetic left breast does not fall into the bra cup in the same way as my right one.

 So now I am a cyborg[i]. I know I am a cyborg (albeit in a trivial way) when I wear my reading glasses, but when I remove them I can pretend that I am not one. But now I can no longer deny my permanent cyborg state. I cannot remove my breast implant and, post-mastectomy, I don’t want to be without it. When I was first told that I should have my left breast removed because I had a rare (pre)cancerous condition—Paget’s Disease of the Nipple—my first response was that I did not want to wake up without cleavage. Such vanity! Nevertheless, the text that I want to write for myself as a labouring, desiring, and reproducing system obviously demands that I have cleavage. But I had to wait several weeks until the tissue expander had the desired effect.

‘It’s only a small rash’. For several months that was how I described to myself the 0.5 cm x 1 cm rectangular patch of reddened skin on the lower left side of my left nipple. I hadn’t noticed its arrival—it was simply there one night as I undressed for bed, and it didn’t seem to get any bigger. I was preoccupied at the time—busy at work and grieving the then recent death of my mother—so I tried to ignore it. Months later, in May 2001, I mentioned it to my GP at my annual checkup. She immediately sent me to a Breast Clinic where a mammogram was all clear, and the doctor sent me home with cortisone cream and a return appointment for mid-August. I was to use the cream for a month and return if the rash got worse. The cream had no effect but the rash got no worse so I did not ask for an earlier appointment. I raised the possibility of Paget’s Disease with both my GP and the Breast Clinic doctor but they each dismissed it in the light of the clear mammogram. I had previously been alerted to the existence of Paget’s Disease through an email forwarded by one of my doctoral students about someone who had died from it. But my condition did not match the images and descriptions of sufferers from Paget’s Disease of the Nipple that I found on the web, so I was content to dismiss this possibility too.

According to medical statistics, only 1% of patients diagnosed with Paget’s Disease of the Nipple manifest it as a primary cancer. The remainder develop it as a secondary symptom and my web searches of medical literature and encyclopedic entries revealed all sorts of horror stories about its manifestations and treatment. I found the doctors who rejected this diagnosis quite reassuring. Nevertheless, the rash was always on my mind as I taught two challenging Masters courses in Canada during July 2001, so I showed it to my skin specialist when I saw him for treatment of some sunspots on my return to Melbourne on the last day of July. I hoped he would say it was another sunspot. He didn’t. He immediately declared his suspicion of Paget’s Disease and took a biopsy. The next few days were very stressful and when his diagnosis was confirmed a week later I fell to pieces.

At this point of my story I depart from the emotional trajectory of Bogle’s song, because I am thankful that my family was there waiting for and with me—holding, reassuring and supporting me. My husband came with me to every subsequent doctor’s and surgeon’s appointment and was there to listen and ask questions and talk through the issues. As academics with biological science backgrounds, we spent many hours searching the web for more information. We went to the doctor’s and surgeon’s appointments armed with information gleaned from medical journals. Our 19-year-old daughter was brave-faced and supportive during the day but she too fell to pieces at night, overwhelmed by the pessimistic prognoses she found through her own web searches. Our 12-year-old son was strong for me—always there with a cuddle—but troubled and fragile at school.

When an ultrasound ordered by the Breast Clinic doctor also was clear we were buoyed with hope that only minor surgery might be needed. Perhaps I would be one of the lucky ones after all. The surgeon confirmed that I was one of the rare people who only manifested Paget’s Disease as a primary ‘pre-cancer’ (this is the name he gave it then, but now he says ‘cancer’; I must ask him why he changed his terminology…). He agreed that a conic excision (removing only the nipple, aureola and surrounding 1 cm of tissue) was one possible treatment. But he recommended that a better cosmetic outcome would result from a simple mastectomy (removal of all the fatty tissue of the affected breast, but no muscle or lymph tissue) followed by breast reconstruction. Because my personal body image was important to me, my husband supported my decision to have a simple mastectomy and reconstruction. Some friends and colleagues suggested that I seek a second opinion. I didn’t. I wanted to write myself out of a cancer story as soon as possible. The initial surgery was late in August followed by a reconstruction in December, so it is all behind me now.

 I am pleased that my surgery involved no loss of muscle or lymph tissue, and that I had no need for radiotherapy or chemotherapy or to take tamoxifin for years, but my bodily appearance now differs little from that of women who survive these procedures and prescriptions. I still wonder if my rash was a secondary cancer and if the primary still lurks somewhere beyond my breasts. Is that how cancer works? Does anyone know?

My surgeon assures me that now I have the same probability as the rest of the female population of developing cancer in my remaining breast. And he reassures my daughter that Paget’s Disease of the Nipple is not an inheritable form of breast cancer (does he really know this?).

I worry about how and why so many women develop breast cancer. It seems that each week I hear of a friend or colleague, or partner of a colleague or friend, or the mother of a student, or a postgraduate student herself who has/had breast cancer. Is this simply my heightened awareness? I think not; breast cancer just does seem to be more prevalent.

I also wonder what would or could have happened if I had not gone ahead with the surgery. Paget’s Disease of the Nipple develops slowly. Could I have kept my breast for several or even many more years without any ill effects? For my family the important thing is that the spectre of cancer is behind me and that I again have normal mortality expectations. But for me…?

I breast-fed my two children for a combined total of 5.5 years. This didn’t stop me developing breast cancer, but then my membership of the 1% primary Paget’s Disease group indicates that my situation is exceptional.

The moral of my story? I recommend that when you do your monthly breast examinations that you don’t just look for lumps but look for rashes too. And if you do find a rash or a lump don’t go down the medical/surgery road alone if you can avoid it. Although you might feel that you want to grieve, mourn and pity yourself, others are not looking at the place where your breast used to be. They are happy that you are still with them (and I try to give myself the same answer).

How did I come to be so (apparently) positive about my experience? Perhaps in some ways it was because, only 3 days after I was discharged from hospital last August, my husband went to South Africa for two weeks to honour a work commitment. He did so with some reluctance but we weighed all the alternatives very carefully and our decision suited both of our longer-term interests. This might seem a little silly, but in his absence I deliberately ignored or refused the many offers of assistance from friends and chose to act as a normal mum, getting my son to school each morning and having meals on the table every evening for the three of us. I moved rapidly from self-pity (he’s left me to look after the children by myself!) to self-sufficiency. I really wanted to be supermum again for the children, and that desire helped me to appreciate that I really was still me, albeit a little different.

Donna Haraway’s (1985/1991) cyborg manifesto has been inspirational for my husband’s academic work and writing but I had not seriously engaged it until recently. Now I can see possibilities for relating Haraway’s arguments and cyborg imagery to both my corporeal body and the body of my own research. Haraway concludes her manifesto by asserting that she ‘would rather be a cyborg than a goddess’ (p. 181). Now that there is a prosthesis where my breast used to be, I imagine that I would rather be a cyborg than a tired old hero of a forgotten war.

Reference

Haraway, Donna (1991) Simians, Cyborgs, and Women: The Reinvention of Nature. London: Free Association Books. (Chapter 8, ‘A Cyborg Manifesto’, was first published in 1985).

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Annette Gough is an Associate Professor and Director of the Consultancy and Development Unit in the Faculty of Education at Deakin University. She is the author of Education and the Environment: Policy, Trends and the Problems of Marginalisation (ACER Press 1997).

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[1]Reproduced with permission of the artist Fiona Katauskas http://www.renewal.org.au/fionak/index.html, email <fkatauskas@iprimus.com>

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