Gilly's Story

Breast reconstruction isn't for everyone

Gilly is the founder of Flat Friends, a fantastic online community that supports anyone  who is living without reconstruction following treatment for breast cancer

During the summer of 2012 I noticed that my right breast was popping out of my bra a little bit, but if I adjusted my bra it was fine. I couldn't feel any lumps and naked it looked quite normal, so I put it down to being pre-menopausal at 45 and basically forgot about it.

In April 2013 it was still the same and on a routine GP visit for something else I asked her to check it out. She wasn't happy so referred me to the breast clinic. Mammogram, ultrasound and a core biopsy later I was diagnosed on 2nd May 2013 with grade 3 IDC, ER+ and HER2+. With no family history, it came completely out of the blue!

I had a mastectomy and full node clearance on 15th May. I was relieved to have it cut out and although I had loved my breasts, I wasn’t mourning the loss of one of them. It tried to kill me, so it was gone, end of! I went on to have FEC chemo and Herceptin and of course the dreaded Tamoxifen!

During my treatment my surgeon had explained to me the different types of reconstruction that I could have once treatment was over. I hated being lopsided as I had E cup breasts and the prosthesis I had was heavy and uncomfortable, but going without it I was very self-conscious. I have 2 horses and walk dogs for a living and all the recon options involved lengthy recovery and a high risk of needing further surgery. I started to think about having my healthy breast removed and living flat.

"What right did they have to deny a much simpler and indeed “healthier” surgery?"

I researched the internet trying to find other ladies who had made that choice. The online forums I was a part of were all very pro recon, so I felt very alone. I finally found a group in America for ladies who had chosen not to have reconstruction. I finally felt normal and like I belonged. But the health system in America is very different to ours and the shops and things they talked about, we didn’t have. There were a few UK ladies on the group, so I decided that we needed a group over here, so I started Flat Friends. The UK ladies joined and in a year we now have nearly 300 members.

I went back and saw my surgeon once chemo finished and he agreed to remove my “healthy” breast, this was done in April 2014 and I haven’t regretted it for a minute. On talking to ladies on Flat Friends, I realised how lucky I had been for my surgeon to do a prophylactic mastectomy, it appeared that many surgeons just straight refused to do it, but would happily put ladies through extensive and risky reconstruction, this didn’t make sense to me. What right did they have to deny a much simpler and indeed “healthier” surgery?

At one of my check-ups I mentioned this to my surgeon and he was really interested in what was happening and our group. He took our issues to some researchers, SHORE-C, in Brighton. We are now in the middle of a research project to find out what patients are offered surgically after a breast cancer diagnosis and my goal is to see every breast cancer patient offered a prophylactic mastectomy as an equal option to reconstruction if they want it.

I was also lucky enough to be asked to advise EastEnders on Carol Jackson’s role as a character who had had a double mastectomy because of breast cancer. I played her body double when she faced her scars in the mirror for the first time. Lindsey Coulson and I also appeared on This Morning to promote the show and awareness for Flat Friends