Hello
I found out earlier this summer that I have the mutated BRCA1 gene. I felt very confident about risk reducing surgery and went ahead and had my ovaries removed last week. However, the experience has really knocked my confidence as it was far more difficult than I expected (anaesthetic etc). Added to the biopsies I had to have after screening, I am already feeling really pulled and chopped about! I am now very frightened of making the wrong decision about what to do next. I had thought I would go for reconstruction but am very concerned about the recovery time and scarring. Also off putting is the prospect of repeated attempts to get the breast shape right. I would really like to hear from anyone regarding just how bad the operation is, and also very importantly, how much post op work is involved after reconstruction, does it hurt?
Kind regards
Hi
Welcome to the Macmillan Community, although very sorry that you have had to find us and have gone through so much recently!
This group is a bit quieter than the main breast group as it's natural that not all women with breast cancer have the gene, so if you don't get a reply on here, then it may be worth your while joining the breast group and copying and pasting your question there. There are many ladies who have and have not opted for breast reconstruction and I am sure you will get some solid answers.
I am not sure where you are with your breast surgery, ie I get the impression you haven't had any surgery to your breast yet? If you do post in the breast group if you could say what surgery options you are looking at. (mastectomy and reconstruction / just mastectomy etc). There are different types of reconstruction surgery too, so you may want to mention the type you are thinking of - or if you don't know ask the ladies for their advice on this.
Kindest wishes,
Hi
Sorry to hear there is another lady who has to go through this difficult decision making. I have had double mastectomy, with immediate DIEP reconstruction and oophorectomy.
Although you have been put off by your recent surgery, I would say not to reflect on this and go back to the confidence you say you felt when you first found out. It is very difficult to talk yourself out of this decision, believe me I did it numerous times! There are a million questions and fears going around in your head! It’s scary, you have the fear of the unknown and nobody can tell you how you will truly feel after surgery as everybody is different, all I can do is tell you my experience!
I am not sure if you have spoken with a surgeon to look at your reconstruction options, for me because I had had previous cancer treatment it was suggested to go with the DIEP surgery, which is obviously very invasive surgery. Was it scary? Yes ..... Was it painful? Not as much as I expected ...... Was the experience as bad as I imagined? Not really, I was pleasantly surprised! Even the catheter, which was one of my fears wasn’t as bad as I thought!
My surgery was just under 10 Hours and I was in hospital for 4 days and returned to work within 8 weeks. I am relatively slim (Size 10-12) so unfortunately I did not have enough fat to make my breasts the correct size from the start, they were a little flat so although I wasn’t 100% happy at the beginning, I was confident with some Lipofilling, I would get the result that I wanted.
My main surgery was in 2015, and due to the NHS waiting lists and been a perfectionist, I am still tweaking! I actually have my final top up and nipple reconstruction in the next couple of weeks! I don’t think this is the norm for it to take 4 years! 
Please remember this is after having a DIEP and if you choose Implants the surgery is very different. I had a family member who had implants but she first had a mastectomy (because she had Breast Cancer) then skin expanders and then implants but she had her immediate size as she chose her implant size and shape. So as you can see everybody is different, which is why you need to discuss in depth with your surgeon your options.
At the end of the day this is one of the most difficult decisions you will make and not one to be rushed into but once you make your decision you will know that you are doing the right thing.
Although I am still on my reconstruction journey, I have absolutely no regrets in my decision as I now have peace of mind that I have done all I can to prevent my cancer from returning. Sometimes some pain is worth it!
If you have any further questions you would like me to answer, please feel free to send me a friend request.
All the best and Good Luck!
x
