Would you or have you had breast reconstruction?

[BenWillbondsPants]

How did you decide what to do?

I found out last week that I have a mutated BRCA2 gene. I'm currently having chemo for breast cancer and due to finish next month. I saw my oncologist today and he said that I should think about possibly having a bi lateral mastectomy as a result of my gene test results. I have had breast conserving surgery previously but the gene result does change things, along with some other factors.

I feel that my best shot is to have a mastectomy but I'm really undecided about reconstruction. One minute I've decided that I'll have it and the next I feel i'll not bother as the risk of complications is smaller. I'm not sure of the recovery time either, I need to ask the surgeon about that too - I've so many questions. I'm a keen runner and worry that I won't be able to run without worrying about doing some damage! (I know that's a silly question).

Obviously I'm not asking anyone to tell me what to do, I've a lot of thinking to do but of any of you are happy to share your experiences I'd be so grateful.

Hi there! I'm a carrier of the Braca gene. I had breast cancer in 2016..I was 42 at the time..my cancer was quite large in the left breast so had no choice but to have a mastectomy.Myself and oncologist decided rhat I should have a double mastectomy followed by immediate reconstruction by diep.it all happened quite fast after chemo and radiotherapy ..the recovery was long but I wanted all the surgery out of the way at once...I must say that the cosmetic look of them was great! But there is still not alot feeling in them and I get pains and needles still from the nerves settling down . I decided against nipple reconstruction as knowing my luck they would probably go black and fall off..I was booked in for tattooing but chickened out last minute .I'm not bothered about nipples anyway! . The main problem is the recovery of the op..it took me about 8weeks before I could run again and it was a painfull time ..the actual stomach scar is hip to hip and hasn't bothered me at all...i also had my ovaries and tubes removed which i really regret ..awfull symptoms ever since..and was thrown into early menopause..i wish i hadn't of done it but all my aunts have sadly passed from womens cancers and I have an young autistic son to think about .its a very personal decision but I'm awfull with pain anyway so it was never going to be easy for me .good.luck x

Thanks for sharing your experiences @Milkandcornflakes, I've to have my ovaries removed too but that'll be some time next year. I'm through the menopause so I'm hoping it won't affect me like that. I'm 54 and so unsure about recon I keep changing my mind!

My dmum is under genetics clinic at the moment for BRCA gene as she’s just gone through her treatment, as it’s the 3rd gen of breast cancer for her me and DSis were advised to engage with breast services. I’ve been already and discussed with the team and would have no hesitation about removal.

I had a double reduction 15y ago anyway for other reasons but wouldn’t miss them. I have zero feeling and odd shaped nipples now. DSis however wouldn’t do it.

I had a prophylactic bilateral mastectomy with immediate recon with implants. I wanted the easiest and fastest recovery which is why I opted for the implants. I could lay on my side in bed after about 2 weeks but did have to avoid lifting anything heavy for ages. Another weird side effect were the muscle spasms that happen when your chest muscles get cold.
I think recovery is based on the type of reconstruction you chose. I could exercise if I had a really good sports bra on.

I think I've decided against diep for a variety of reasons. So it's implants or nothing really. I'm worried about implants hardening or rupturing or something and I suppose I just want whichever surgery will be the easiest to recover from, who which is probably no reconstruction at all.

My logic was that I would give implants a try and if something went wrong with them then I would have them removed. I was happy to have no boobs if the implants didn't work out. Honestly, I just wanted my breast good and gone.
Out of all of the reconstruction options implants have the fastest recovery, with the exception of no reconstruction at all. It's been 5 years since my surgery and my 'boobs' are soft, swishy and warm.

@EraOfTheGrey that's a really good way to look at it. I think, if I'm honest, I'm just scared of any problems.

I was in a similar position. I was diagnosed with bilateral breast cancer at 36. I have the brca2 gene too.
I chose not to have reconstruction. I'd had a year of active treatment, then ovary removal, then surgical menopause.
The last thing I wanted was more surgery especially as due to my radiotherapy implants weren't an option.
I'm ok being flat. I wear prostheses, some of the time. It can affect what necklines you wear.
It's my 42nd birthday next month, I'm going to get some fabulous flowers tattooed across my scars!

I had to discuss my surgery and expectations with a psychologist before the consultant would agree surgery. This is standard practice for prophylactic surgery. Could you ask to speak to someone? I found it easier to conclude how I felt about it all when speaking to the psychologist.
Everyone, and I mean everyone will have an opinion on what you should do. One woman even told me that she could and would never have her breasts removed. I replied that hopefully she will never have to make that choice.

I'd had a year of active treatment

I think this is also affecting how I'm feeling - I'm literally on my knees with my chemo at the moment and I've just had enough of 'treatment' of any sort so I suppose I'm looking for the simplest solution.

Having said that, I'm very lucky that I'm in a position to have treatment and to recover. Some people are not so lucky.

I think you have to go with what is right for you at the moment. Ask yourself what is the 'simplest solution' to you. I saw myself as only having 2 options; implants or nothing. As I wasn't undergoing treatment then the decision was easier for me.

It's crappy having to make the decision at all isn't it.

That it is...

My sister (48) had a bilateral mastectomy without recon 3 months ago. She just wanted to be well again ASAP and felt reconstruction would massively add to recovery time. She had the surgery and left on the same day, went into a work meeting the next day but her recovery has been harder than she anticipated. She's had lots of fluid retention, her chest feels very tight still 3 months on and she is so glad that she chose this option (although everyone including the surgeon advised against it!) She said diep might have killed her.

@cardamoncoffee this is my worry, I feel like it's not going to be easy in any event so anything that I don't have to do is an added worry if you know what I mean?

@BenWillbondsPants totally understandable, my sister had exactly the same train of thought. Although harder than she thought, she was able to carry on normal life very quickly (although no heavy lifting) which was very important to her as her dc have very busy lives. She was able to go on their annual family too. If she went down the diep route she thinks 3 months on she 'd still not be able to drive yet.