//Breast Reconstruction, and Why ‘Living Flat’ Is an Acceptable Option

Breast Reconstruction, and Why ‘Living Flat’ Is an Acceptable Option

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.

To read the orignal article written by Sarah

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  1. claudia larsson 27th April 2016 at 1:38 pm

    Thank you for this share. I just had a simple double mastectomy. Have BRCA2 mutation so even tho only one breast had tumour we did both. I am not doing reconstruction as of right now – I always leave the door open. I don’t know how I am going to feel in a year, 2. I’ve never experienced this before. Am pretty positive tho that i will NOT want yet another surgery, and tubes and all. The good news is no more bras 🙂

  2. Allison 27th December 2016 at 9:57 pm

    Hi, I had my mastectomy over 15 years ago when I was 31, I had immediate reconstruction but now since a recurrence of breast cancer 5 years ago in my other breast I’m considering having the implant removed as I’ve lost a lot of weight so the implant is a lot bigger than my natural breast

  3. Helga duffy 26th February 2017 at 11:42 am

    Hi, I am new to this forum and would like some advice and or anecdotes.
    I have had breast cancer, a single mastectomy with immediate implant reconstruction. Unfortunately the cancer had spread to my lymph and I needed chemo and radiotherapy. The radiotherapy caused capsular contracture with migration of the implant. It is very uncomfortable and so am now deciding which options to follow. I have been to a BRA meeting at Maggie’s- which was great but incredibly daunting. So now my query is about going flat. How long does it take to recover? And can I have my healthy breast removed too, as I am of a small build with size F on remaining side and feel uncomfortable.

  4. Penny gedge 28th February 2017 at 12:57 pm

    I forgot to say I’m 56 happily married with four children and seven grandchildren and my whole family including my siblings are all behind me and I feel very lucky to have them x

  5. Penny gedge 28th February 2017 at 1:32 pm

    I can’t thank flat friends enough it’s because I was able see photos of you brave women that I was able to stand my ground and have a bilateral mastectomy after I had to persuade my female surgeon that I wanted both breasts at the same time and no reconstruction as I had large breasts she could actually see it from my point of view I’m so grateful that she managed to get it past the M D T it’s only been 4 weeks and I still have chemotherapy and radiotherapy to come but knowing flat friends are there with support is great x

  6. Jean Keagle 12th March 2017 at 11:06 pm

    I think you are all amazing and strong. Do what YOU want to do!! I had a double mastectomy in 2001. I had reconstruction because I wanted to but I think you all should be able to chose whatever you want!! Now that I’m sixty, if I have to have surgery I’m going flat with you cool chicks!! Lots of love!!

  7. Aurora 6th August 2017 at 11:26 am

    Hi, can anyone advise about sexual matters? My husband and I still had sex after my left breast was removed but as soon as I lost my other breast he has completely gone off it. I fear he just doesn’t find me sexually attractive anymore and it’s really depressing me. I feel it’s my fault we no longer make love as my body let me/us down. But, I also feel he only fancied me for my breasts and now I don’t have them I am ugly to him. I feel so deeply unattractive and hurt. We are a very loving couple and my husband has been quite upset about how he feels and has spoken to his doctor who prescribed viagra. Can anyone relate to this and advise me on how to move forward with my husband? Thank you all xxx

    • Sarah 15th August 2017 at 10:31 pm

      Hey – so sorry you find yourself dealing with this in top of everything else. Are you on Facebook? If so, and if you are in the UK, look up our public group Flat Friends UK and ask to join our closed group from there. Many members have faced similiar situations and you will find lots of love and support. If you’re in the US look for Flat & Fabulous. Much love x

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