BRCA2 + getting double mastectomy

Hello,

I have a BRCA1 mutation and had a mastectomy earlier this year without reconstruction. I had cancer and was fed up with operations so I wanted the simplest most straight forward surgery! However, my sister also has the mutation and went down the reconstruction route, so perhaps I can help answer your questions from our experiences.

1) My sister found out about her mutation in June 2022 and had her operation in July 2023, so just over a year's wait, but I think it varies so much in each area. There is some flexibility in when you have the operation, so your surgeon would understand you wouldn't want it to be just before or after your wedding. Are you eligible for an ultrasound/mammogram/mri in the inbetween time to help keep your mind at ease until the operation is set?

2) yes, there are different reconstruction options available and it is possible to do reconstruction at the same time. My sister had immediate reconstruction with implants and kept her nipples. She is happy with her choice and results, as am I. There's a good website called BRCA chat that has some good info and pictures of different types of reconstruction results. They have a good insta page too and host different events in the UK where you can meet others who have genetic mutations and find out information.

I hope this helps and I wish you the best of luck! Let me know if you have any further questions!

Hi,

I can’t comment on your first question as my mutation was found after my cancer diagnosis.  But on 2, you can definitely have the two operations together, I have just had my other mastectomy plus implant removal and a bilateral Diep all in one surgery.

in terms of recovery, if you go for implants with no lymph node removal you should be feeling pretty good in two weeks judging from my first masectomy and implant surgery.  Diep much longer because of the abdominal surgery, I’m feeling ok now after 11 days but still a way to go.  And remember that after either you need to take care of the new breasts for at least six weeks - and that would include no tight wedding corsets!  So unless you’re going private / get lucky with waiting lists and able to schedule the op for the first half of next year I’d say after wedding is more realistic.  

Tips for recovery?  Get as healthy as possible beforehand, without having anything extreme.  Cardio and core strength in particular.  Try to get to and maintain a weight you’re comfortable with, particularly with Diep you want to avoid major weight change after surgery.  Take all the help and support you’re offered, particularly in the first two weeks, and then take time to heal before throwing yourself back into either work or wedding planning.  

Thank you so much! That website is so helpful 

Thank you that is very helpful. Tell me what diep? 

*is 

Diep is a form of reconstruction using the skin and fat tissue from the tummy to reconstruct the breasts.  The advantages are that it’s using all your own tissue, and the breasts feel soft and warm and have a more natural droop and movement than implants.  The disadvantages are a longer recovery time, height risk surgery, and large scar right across the lower abdomen at the bikini line.  There are also other sites the can take the flaps from if for any reason your abdomen isn’t suitable. I had real problems with my temporary implant feeling hard and uncomfortable and looking very “stuck on top”, but others get on absolutely fine with implants.  

There’s a lot of information out there about breast reconstruction options, I’d start with the Macmillan leaflet but take your time to understand the options and choose the one that’s right for you.  Don’t let any surgeons push you into something that doesn’t feel right for their own convenience or because of their view on what YOUR body should look like.