Double Mastectomy and Recon - BRCA1

Hi Em, I have had a double mx too, although done separately, cancer side in 2018 and contra lateral for risk reduction in 2023. I had temp recon, so was never flat, but hated the lumpy Tiloop mesh used. I’ve now had permanent implants, as I was told it was another 5 years before I’d get the diep flap, due to the waiting list! I can tell you, as I had to wait 5 years for the risk reducing mx, that I hated the wait. I worried every day and couldn’t wait to be rid of the remaining breast. I felt it was just like a time bomb, waiting to destroy me. I have never, ever regretted the decision. I was just past my 51st bday when diagnosed, so quite a bit older than you, but I know I’d have felt the same irrespective of my age. You can’t have the same treatment again and who wants chemo twice, if it can be avoided. It nearly killed me and no way was I just accepting any more risk. Stick with it and don’t think of it as losing your breasts, but as losing the risk, the thing that is trying to kill you. Good luck, xxx

Hi there, 

I am also 37 and was diagnosed BRCA1 in 2005, i had a double mastectomy with reconstruction (preventative). 
I didn’t have it along side chemo so I can’t answer any questions on that but I’m happy to answer any questions related to surgery. 
Sending you love 

Sarah 

Hi 

I also have TNBC and was diagnosed in March 2025, I started the same treatment and also found the EC chemo absolutely horrible, I have had all four roundsof EC - I have back ache and numbness in my legs, have had nausea and vomiting, and also streaming eyes and nose, loss of hearing etc. Today I have MRI and PET TC tomorrow. Ask for your tumour markers to be done, I am also due to have an operation, I think it will be the same DM and Reconstruction. The girls who I joined an exercise class with (have all had cancer) have assurred me that the chemo is worse than the Double Mastectomy.... There are options around reconstructiion, including having the fat taken from your abdomen, Im hoping I can have this. I can imagine how hard this has been for you, its incredibly hard, I had a lot of family stress over last year or so and these stressful events take their toll. 

I realy hope my message gives you some comfort that you aren't alone, so keep strong. One of the Macmillan nurses sent me some info on TNBC, and their is a UK charity dedicated to TNBC, so have a look at this as it was useful. 

Sending best wishes, postive thoughts and lots of hope. 

xxxx