Unlike Carol Jackson I had made a decision not to have reconstructive surgery two years prior to being diagnosed with invasive breast cancer. In the Eastenders storyline Carol is struggling with coming to terms with her body after surgery for breast cancer. She is so overwhelmed by the loss of her breasts she cannot bring herself to consider the reconstruction being offered to her. It is a complex and difficult decision to make. At the time I made my decision not to reconstruct I had no idea I would get breast cancer. No idea I would have to have a mastectomy. No idea I would be the one in three who would get cancer.
Like many women I was supporting a friend through her diagnosis and treatment choices. She asked me if I thought she should have reconstruction. My whole body convulsed as I said “No.” I was shocked by the intensity of my response. Looking back the tumours were probably already there and perhaps my body was telling me I would soon have to make this decision myself. My friend chose to have reconstruction. There were complications. She had multiple surgeries. The cancer spread. She died in January 2014.
Flash forward to May 2014. I have breast cancer. I am sitting in the surgeon’s office. I have accepted I need a mastectomy. I remember the conversations with my friend. I know I don’t want reconstruction. I tell the surgeon I don’t want reconstruction but however loud I say it he doesn’t hear me. He offers me two types of immediate reconstruction. I say I don’t want reconstruction. He says I can have it later. I say I don’t want it later. I don’t want it at all. This goes on. A conversational groundhog day with three different surgeons, one of whom was a woman.
The Breast Cancer Nurse asks my boyfriend if he is okay with my decision not to reconstruct because it could affect our relationship. He says “I don’t care as long as she’s alive.” Finally the doctors and nurses accept I don’t want reconstruction and that both my boyfriend and I will be able to adjust to my new body. I have a single mastectomy. The nurses on the ward presume I am having a delayed reconstruction. I tell them I’m not.
I get my results. I get the all clear. The surgeon tells me his only regret is that I didn’t have immediate reconstruction but I can have it later. I don’t bother responding. I am elated to have the all clear and bored of saying the same thing over and over again. I don’t want to ruin this moment.
A year on and I know I made the right choice for me. My boyfriend still loves me, I have been able to return to full time work, go on holiday and live a “normal” life. Despite the emotional trauma of the cancer diagnosis I made my decision and asserted myself to get the treatment I wanted. I relied on the support of my friends and family. I also relied on a whole new community of friends on line. Via social media I met women from all over the world who were living without reconstruction and were challenging the dominant belief that reconstruction is an essential part of breast cancer treatment.
Through this online community I got to hear stories of people living breast free. Many of them had double mastectomies and were living completely “flat” rejecting all prostheses. These new friends shared photos of their scars, so I knew what to expect after surgery. They shared stories of having to stand up for themselves to get the treatment they wanted, so I knew I wasn’t on my own. They taught me not to be ashamed of my new body, to accept my difference not disguise it.
One of these new friends, a lady called Gill Roberts, has set up a UK online support group called Flat Friends, for women who are living without breasts. Some of us had double mastectomies and go flat and some are “uni boobers” like me. We all have different stories, some of us chose not to reconstruct, some have deconstructed after failed surgery, some have had preventative mastectomies and some like Carol Jackson, are currently flat but considering reconstruction at a later date.
This group has been invaluable in helping me come to terms with my post-surgery body. Being part of this community I know I am not “militant” as one of the hospital nurses described me, but just a woman who was absolute in her resolve to avoid any additional surgery. For me, getting back to normal life after cancer is not about getting a new breast but getting as healthy as possible, as quickly as possible. The truth is I have lost my breast to cancer and no surgery will replace it.
I am not anti-reconstruction but I am firmly pro-choice. The treatment I got from the NHS was unequivocally brilliant apart from the assumptions everyone was making about my need to have reconstruction. I believe that the medical team thought they had my best interests at heart. They had the facility to replace my breast and they wanted to help me. I don’t blame the medics. I think they were just reflecting the dominant messages of our society that surgery is simple and breasts are everything. Many, many women are extremely grateful for the range of reconstruction choices available on the NHS. I just wish they had presented not having reconstruction as a choice equal to reconstruction. I just wish they had listened to me sooner.
I want to take this opportunity to thank all my “Flat Friends” for giving me the support I needed to make my decision when the mainstream services didn’t hear me. I want to tell every woman facing choices about reconstruction post mastectomy that you have to make the choice that is right for you. These choices include both reconstructing and not reconstructing. Living flat is an acceptable option and if this is something that resonates with you there is a whole community online just waiting to support you.
Sarah is a founder member of Flat Friends the online advice and support group for women living without reconstruction after mastectomy.