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Breast Reconstruction - Please help, I'm having risk reducing breast surgery, have been told to choose which kind I want and I don't know! Any experiences out there?

(34 Posts)
cookiemonstress Sat 08-Aug-09 11:01:50

Hi
Hoping someone can give me some insight. I have inherited the BRCA1 gene from my mum and have elected to have risk reducing surgery later this year (at Guys).

I'm naturally big chested and very out of proportion for my size. I wear a 32FF bra and size 10/12 everywhere else. I'm happy to go smaller though. THe plastic surgeon has told me that he won't be able to do the nipple saving operation as I'm "too droopy" (!).

He has said I have a choice of 2 options.
1) The LD flap thing where they swing muscle round from the back and insert an implant underneath with nipple reconstruction.
2) The Diep flap with microsurgery from the abdomen with nipple reconstruction.

Have so many questions. The medical team have been good but still can't choose.

Has anyone had either of the reconstructions? If so, , what's your experience (good and bad), why did you opt for the one you choose?
Did you have it done on NHS or privately? What's best way to prepare myself? What would you do differently? What can I expect the journey to be like? Have you had your ovaries removed as well? I have a tattoo on my stomach, will I loose this with the Diep flap option?

The BRCA1 confirmation wasn't a surprise given my family history but it was more of shock than I expected. I went to the multi-disciplinary clinc the week before last and find it quite overwhelming although very supportive. I feel like the fog is just clearing and am trying to focus on the positives that this operation will give me. I have good and less good days though and sometimes with the rest of day to day life to contend with as well (Mum has terminal diagnosis and is ill, dd1 is due an operation and starting school, work stress etc) it is all a bit mind blowing!

Thanks to anyone who can share their experience with me.

cookiemonstress Sun 09-Aug-09 08:59:53

bump?

lou031205 Sun 09-Aug-09 09:31:01

I used to work on a breast ward. The latimuss dorsi op is slightly easier to recover from, but not ideal if you are very sporty, because it will reduce arm strength slightly. Only important if tennis, etc. important to you.

The abdominal is slightly harder because you use your stomach muscles to sit, so will notice it more in the early days. Often chosen by women who would like a bit of a nip/tuck on the side wink.

cookiemonstress Mon 10-Aug-09 07:58:42

Hi
Thanks for this Lou, v helpful. Do you have any sense as to which looks better overall. I know one is prouder and one 'more natural' but I'm having a problem picturing the outcome. A lot of the (Few) pics around tend to picture older women (i'm mid 30s) and it's hard to visualise the overall outcome.

Thanks!

lou031205 Mon 10-Aug-09 09:51:59

No, to be honest I worked on the ward about 9 years ago. But I have since worked on an outpatients clinic specialising in breast cancer surgery, and seen lots of post op women, too. I think results are variable. Have you been offered the option of nipple tatoo?

cookiemonstress Mon 10-Aug-09 12:09:56

Hi
Thanks for coming back to me. Yes, been offered nipple reconstruction and tattoing. From the photos I see, this seems very haphazard though! Do you know if people ever do this privately and would it make any difference? I don't really want to pursue privately as happy with my experiences so far at guys but wonder if there is anything in the outcome that makes it better to go privately?

bishboschone Mon 10-Aug-09 12:28:28

hi there. I am waiting to see if I have the brca1 or 2 gene from my family. I have decided I will have the op if I have . Not sure thats at all helpful but just thought I would post. Did you see that programme 'my boobs amy kill me?' recently. It was very helpful to me.maybe look on youtube if not?

lou031205 Mon 10-Aug-09 14:18:52

I would imagine they do, but in general private practice is NHS doctors who run private clinics. Shouldn't be a difference in outcome.

cookiemonstress Mon 10-Aug-09 18:23:50

That's what I thought and i've just googled my consultants and they do run private practices as well. I just thought I should research all options but realistically will opt for NHS.

Bishboshone, I did watch the first part of the programme but got so irritated by Dawn Porter that I couldn't face the second part, especially when I learnt beforehand that she didn't have the gene. It was bad/good timing as well as I got the result only the week before the programme. I actually called the helpline advertised (you know, the mother and daughter combo), very sweet people but not massively helpful in terms of the info I'm looking for i.e. anecdoctal, technical input. The daughter's boobs looked amazing after but she was able to keep her nipple and actually went for a larger size breast, so my sense is that her look is the panacea of breast reconstruction and necessarily the norm. Someone did say they had other reconstruction on the second bit, so I should research. I really hope the outcome of the tests is negative for you. I had been pursuing the tests for a few years (my mum wouldn't do it initially) so felt I was fairly well prepared for the news, but it was more of a shock than I had planned for. Both after the test results and after the initial multi-disciplinary clinic it felt like a fog came down for a few days but once that cleared, I normally feel quite positive about it all. If you do find yourself positive and you want to keep in touch, let me know and I'll send you my email address.

Lou, thanks again for your help!.

lou031205 Mon 10-Aug-09 18:50:22

A pleasure. This book might help. The author, Dick Rainsbury works at the RHCH in Winchester, the hospital I worked at. I believe he pioneered the TRAM flap (abdominal) reconstructive surgery during mastectomy. You could ask for a referral to him for a second opinion as to the best option, if it helps.

cookiemonstress Mon 10-Aug-09 22:14:16

Thanks so much for this. Have just popped book in Amazon basket! Will be useful to read about what I can expect it to be like afterwards.

SingingBear Mon 10-Aug-09 22:23:32

Message withdrawn

bishboschone Tue 11-Aug-09 09:04:04

HI, Cookie , thanks for that. To be honest I have had a long time to think about it. All the women on my maternal side have had breast cancer so I have known for a long time that it is likely to come to me and my sister. The programme helped me make my decision as it showed you can still look like a woman after this op. My grandmothers chest was very scary as she had a double mastectomy 50 years ago and that was my only experience. I have been told I will also have to consider a hysterectomy and that worries me more because of the implications of hormones etc but I will deal with that when the results come in September.
Good luck with your op.x

Plonketyplonk Tue 11-Aug-09 11:33:13

I had a mastectomy and reconstruction at Homerton in London a couple of years ago. I had the muscle taken out of my back and an implant. There is a charity called Breast Cancer Haven who may be able to offer help and support. Breast Cancer Care also have a very good helpline. The kind of reconstruction you have will depend on some external factors, like your age, your size, what you like to do physically etc. Do you have a good bc nurse?

cookiemonstress Tue 11-Aug-09 21:48:33

Hi Ladies
A lovely surprise to see some new faces!
SingingBear, thanks for your kind message. I will watch the second part of Dawn's programme. My friend mentioned that there was more reconstruction on the second part so I'll try and track it down. I really hope you get good news in terms of the test results. My results came back quite quickly from Guy's. It took them three months to find the mutation in my mum's sample and then less than a month for me to get my results. So far I've had a really positive experience at Guys and I've just googled the breast surgeon and the plastic surgeon that I'm under there and they seem to be very experienced so I'm feeling more confident.

Bishboshone, good luck with your test too. Like you I had also had a long time to think about it, so I was surprised to be surprised by the results. I didn't give it too much thought and stupidly thought "well, there is 50% chance I won't have it, so I probably won't". Am feeling more positive about it now though and feel very lucky to have this opportunity to reduce the risk. I have deferred the ovary and tube removal until I've had the breast surgery. I know what you mean about it being more of a worry. I did meet someone who had had their ovaries removed and found HRT to be really positive so I didn't feel too bad about it until the consultant discussed the fact that sometimes HRT doesn't always work (although rare i think).

PLonketyplonk, thanks for sharing your story. Hope things are ok for you now? Thanks also for the charity info. I'll look into Breast Cancer Care and someone else also mentioned cancer backup. I do have the details of a nurse who i've spoken to once. I'm just having problems visualising what the outcome will look like. I swing between the options daily!

SingingBear Tue 11-Aug-09 22:20:50

Message withdrawn

TeaMonster Wed 12-Aug-09 01:08:52

Hi there

I too am mid 30,s with BRACA1 spelling mistake. I had my ovaries removed over a year agao and it was a really simple op, in and out and back on my feet in two days.

I had a bi-lat mastectomy in Feb this year with implant reconstruction for a number of reasons. I am a larger lady, I had a 3 adn 2 year old, so didnt want the longer recorvery time etc and I had a terrible time of things - I used to be TheMadHouse. I dont want to scare you but if you are interested have a search under my old name. Very breifly - I rejected the implants, developed an infection, came home with drains in, became septic, nearly died and took months to recover sad

TBH I am back to see my consultant on Thursday, to see what more can be done to tidy things up.

BUT..... My cousin had the transflap op nad it was fine - longer recovery, more pain than she expected, good shape and result and she will be having her tatto work later in the year, but she has a 14 and 15 year old and was able to have complete rest.

Your consultant should be able to arrange meetings with ladies who have had both of the operations for you to talk to and look at, also regarding the nipple saving. As the nipple is made up of breast tissue the safest option is to remove them.

I had over a year from diagnosis to opeeration (Jan 08 dia, july 08 oopmarectomy, Feb bi-lat mastectomy). It is a lot to take in and would hope that you are receving councelling and support. McMillan were great.

Anyquestions, please ask

cookiemonstress Wed 12-Aug-09 09:07:32

Hi Teamonster,

Many thanks for posting, it's good to get as many perspectives as poss. I do remember one of your postings relating to your experience, I'm sorry it's not been an easy ride for you and I hope your consultant can give you something you are happy with.
You make a good point about your cousin recovering because she had full rest. I do wonder about that as my LOs are 2 and 4. We are trying to save some money so if we need to get some babysitters etc we can. I really hoping I can get my op at the end of the year as it will be easier for my husband to take big chunk of time off over christmas.
I am getting lots of support from friends/family and the genetics counsellor at Guys has been lovely. That's useful to know Macmillan. A friend of a friend is a breast nurse and she has arranged for me to talk with her also.

Can I ask how you have/will talk to your children about what you have done? Part of my reason for wanting to do this now is that I'm hoping my girls will remember as little as possible of it and that how I look becomes 'the norm'. I remember my mum's mastecomy when I was about 11 and found it all quite distressing. Have you thought about how you will support them through this later?

Singingbear, if you can try to have a couple of normal weeks. Are they sending the results to you or do you have to go in? Sometimes I find it's good to have some time away from the whole problem I find. It certainly puts other stresses into perspective at times!

cookiemonstress Wed 12-Aug-09 09:16:05

also meant to ask you have found HRT following the ovary removal?

x

chocolategal Wed 12-Aug-09 16:39:36

Hi everyone

I am a nurse in a plastic surgery ward and we have 3 consultants who specialise in breast reconstruction so we do 1-2 of these surgeries a week.

Firstly, sorry for you having to go through this.

The DIEP flap taken from the tummy tends to give the best shape, it does take longer to recover from as you also have a large wound on your tummy. There is a risk of flap failure with this, in my area it's around 5%.
We nurse ladies who have this on a 1:1 basis checking the breast every half hour so if we are unhappy with how it looks at all we call the consultant back in immediately. Another thing to bear in mind is it is a long operation.
On average ladies who gave the DIEP are in hospital 5-7 days.

The LD flap and implant is more straightforward. No microsurgery is done. The blood supply is not compromised so should not fail. It depends how you feel about implants, some people want to avoid this. Especially those who might go on to need radiotherapy.

I hope some of that helps.
The hospital should have a variety of pictures to show you and like someone said they should offer to let you speak to someone who has been through it.

chocolategal Wed 12-Aug-09 16:41:31

Sorry for bad spelling & grammer am posting from my mobile.

cookiemonstress Thu 13-Aug-09 09:56:53

Hi Chocolategal
Thanks so much for your reply. V much appreciated, esp from a mobile.

Really interesting to know that the diep flap can give a better shape and reassuring to know that there is such a high level of care. I'm very towards to the diep flap at the moment on the basis that it might require less maintenance in the long term (no implants to replace etc). Wondering whether it's best to invest the time now in the hope of less operations in the future. In your experience, on average how long does it take to get back to being reasonably self sufficient (not to work necessarily but just about to get dds to school/nursery and do a bit of washing etc without being dependent on help?)

Thanks again..

chocolategal Thu 13-Aug-09 13:35:30

Hi cookie
no problem, am happy to help if I can.

A rough estimate would be a few weeks, one lady told me she was scrubbing her bathroom floors 2 weeks after op! We of course don't recommend that!

I think most people who are reasonably fit & healthy go for the DIEP/TRAM flap.

Whatever you decide remember to try to go in to hospital with a positive attitude. The ladies who I have looked after definately recover quicker are those that have stayed positive.
Goodluck x

TeaMonster Thu 13-Aug-09 14:19:51

Hi there

We have been honoust with the boys from the first thing, we told them mummys breasts were poorly and the doctor was going to cut them off and give mw new ones grin

We also told them that I would have drains in taking away the bad stuff and they were fine with this.

Infact I wish me and DH could be more like the boys, they have taken everything we have said and accepted it as the norm. I am their mummy woth cool scars and no boobs. They like to touch them and wanted to look at them loads. I have let them and also DS1 measureed the daily fluid in my drains - he found it all facinating.

I took them with me for dressing changes and they washed their hands and alcoholed them, they just have been fantastic.

They have accceptage the change without question, DS2 who has just turned three was overheard chatting to his friend about Mummy having no boobs and her cool scars blush

The HRT has taken some getting right, but mainly I just suffer with the night sweats adn occasional "mediteranian moment" as me and DH have code named my flushes.

I have seen the consultant today and am going back in for a tough up on my scaring and then going to plan to have the tummy reconstruction when both the boys are in full time school (a couple of years). That way I can have more recovery time.

The facts are that will little ones you can not sit on your backside all day and even when I was up in bed they still wanted to cuddle, be read to and stuff.

But - if I had to do it all again I would, I have done this for the future of my family and to see my children grow up.

blackmonday Thu 13-Aug-09 14:30:17

hi, hope everything goes well for you. i've just got a question and not sure if anyone knows the answer! my mum died of breast cancer back in 1980. I'd really want to know if i was carrying the defective gene. can they test me without samples from my mum?

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