Double Mastectomy, reconstruction?

[ByeByeBoobies]

I am having consultations about having a preventative double mastectomy and would love to hear about anyones experience of the same.

In particular I was wondering about the recovery time, whether to have the reconstruction or not, what prosthesis women wear if they don't have the reconstruction done.

Not sure what my DC will think if they see me post-op and how you would explain it to young ones.

I know I'll get the chance to ask all these questions when I see the consultant it is another 2 weeks until I see them so I'd love any advice or information.

Watching with interest as i'm having the same thing done later this year with immediate reconstruction.

Have you tested positive for BRCA1 or 2?

No, they wouldn't test as there are no surviving women in the family so just going on family history alone. I don't know if they will test later as I have daughters and would like to be able to tell them if they are likely to be carriers or not. I had genetic counselling but not the testing if that makes sense.

skip to the tamoxifen thread as several ladies have had mastectomies..

I haven't had the test either for the same reason. Had to see the clinical psychologist etc but was given the thumbs up!

What method of reconstruction are you going to have?

Paddy I'm thinking that I won't have a reconstruction and just be flat but I'm not sure if I'll regret it because it seems most go for a reconstruction.

I feel like there is far less to go wrong with a straight mastectomy and anecdotally, all the complications I've heard of seem to be with the reconstruction side of it.

I'll go and have a look on the Tamoxifen thread, thanks for the suggestion MaryAnn.

Hi

I had mastectomy with reconstruction (I'm BRCA2) in December and have no regrets. It didn't all go to plan (four operations rather than the one I'd hoped for) but all looking good now.

It's a very personal decision. I'm happy I opted for reconstruction but I had a couple of months flat on one side due to complications and that showed me that I could cope without. It does make life a lot easier not to have to worry about prosthesis or trying to look 'normal' in clothes. Plus I don't need to wear a bra at all now which is a bonus!

I had nipple sparing with implants but there are lots of different options. What are you considering? I have a 3 year old so quick recovery was paramount for me. He has taken it all in his stride. It was hard initially not being able to pick him up or give him proper cuddles but that stage (6 weeks or so) is over so quickly. He also saw me flat on one side (we talked about my 'sad boob') but he was more curious than upset. Children are remarkably accepting.

They found DCIS (early stage breast cancer or 'pre-cancer') in my pathology despite a clear MRI a month before so I know I did the right thing. The decision making and planning is tough but it's pretty good here on the other side.

There are a few of us here who have had the preventative surgery - tiredteddy is one - and I'm happy to answer any questions you have.

Uwaga Thanks for replying, that is really useful. I have a 3 yr old and a 4 year old so having as little impact on them as possible is my main focus.

I think I want the straight forward mastectomy, without skin sparing or nipple sparing. I know the expectation is to have reconstruction but I really don't feel like that is for me. I want the recovery period to be as short as possible and I don't want to have to go back for follow up procedures if I have complications with implants or reconstruction.

We don't have any family nearby (nearest are a few hours away) so it will be pretty full on for my DH with the DC, me and his work. I'm not sure how we would manage with a longer recovery or with unplanned re-admissions.

Skipping the reconstruction seems like the safest, easiest and quickest way. I just worry that I will regret it, but then I don't like the idea of expanders and implants or TRAM/DIEP. Not sure why, just doesn't feel like something I want but maybe I naively think that I will be happy flat.

I had a bilateral mastectomy a few years ago now, and decided not to have reconstruction. I wanted to have the minimum of surgery and mostly I'm happy with either prosthesis or nothing. I do have a couple of "buts" though. I'm not particularly fashion concious but I find finding tops I can wear that don't expose my lack of boobs the minute I lean over is a real pain- ok at home but I need to be smarter for work and hate shirts...
Swimming- not ideal. And I wish I had had the chance pre surgery to discuss the scars- mine go straight across but I have seen pictures of scars curving under the line of the lower ribs- it sounds mad to say that would feel better to me, but it would!!
DCs were older-youngest was 81/2, neither at all bothered- but youngest had to be dissuaded from loud conversations about it eg in swimming pool queue with teenaged Dd and friend!! Good luck with whichever path you decide on.

Hello

I had one reconstruction with an expander implant and it has been good not to have to worry about how I look in clothes, although I'm not exactly in love with the results. In terms of the follow up appointments, it's not too bad in terms of having it expanded, I think I had to go maybe two or three times. I'm glad I did it, even though I don't think it looks fantastic, becuase it means I haven't burnt any bridges in terms of doing further surgery later on. I have small children too, so I also wanted a quick recovery, but now I'm thinking about going back for a more complex reconstruction, so I'm glad I had the implant to begin with. I was always keen to have a reconstruction, though.

Well if that's how you feel I'd say go for it. If you regret it you can always go for reconstruction at a later date. The most important thing is reducing the risk; the rest of it is just packaging. You're right that most complications arise as a result of the recon, not the mastectomy itself, and I can understand why you would wish to avoid this.

I think there's not a great deal of difference in recovery timescale for mastectomy no recon vs mastectomy implant recon with no complications - you're probably still looking at 6 weeks or so of lifting restrictions so you will need a bit of help initially. We also have not a lot in the way of help and my DH is self-employed so not ideal for him to take time off but we planned and we managed. We're lucky to be able to plan our surgeries to fit in with our lives, unlike those blindsided by a cancer diagnosis.

I assume you've looked at lots of pictures so have a realistic idea of what you can expect to look like. Have you seen the scar project? Some amazing images there.

Thanks for the weblink I'll take a look, I have seen lots of pictures and sadly I remember my mums too. I think I have a realistic expectation of what I will be left with, the only bit I worry about is my reaction to it. Maybe I decide to stay flat and then really wish I hadn't!