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?

[cookiemonstress]

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.

thanks for your reply Teamonster, that link was very helpfulx

Teamonster, thank you for responding. I'm glad things seem to getting better for you, or at least it seems so. I just wish it hadn't been such a large blip for you though and I truly wish you well from this point forward.

I've started to drop things into the conversation with dd1 (dd2 is really too little) but she has her own operation (adenoids and grommets) to get through first, so I'll focus on that for now. Can I ask how you managed telling people around you? I have only told people in my immediate circle for now but will need to tell work and other mums at school etc at some point.

It's reassuring to hear that despite the rocky road, you'd do this again. I feel the same, I'll take whatever the outcome is because the flip side is all too real at the moment. Only yesterday we found out that my mum is now resistant to her chemo treatment and it's ceased to be effective. It's only a matter of time now and it's indescribable to be in this situation and feel like every option has been exhausted. It's so brutally unfair that she is in this situation at only 61 when as she says, she still has so much living to do. On days like this, it feels ridiculous to worry about what the aesthetic outcome will be like.

chocolategal, that's good advice about being positive. I won't be scrubbing any bathroom floors even I feel up to it! There has to be a silver lining to every cloud right?!

I've had a DIEP flap delayed reconstruction last month after having a mastectomy 3 years ago. I prepared for it by walking, swimming, cycling, weight training etc in the 7 month run up (I didnt overdo it though - it would still be considered "moderate" activity and I would slow down at the gym to watch the TV!).
The surgery was itself tough but utterly do-able. It was long, 8 hours in total but you come back with a morphine pump (I used all of mine, because I could), drip, catheter (painless) and into a very heated room (to keep everything hot). The 1st day was the hardest as you have to get out of bed and I felt like I had been hit by a truck in my stomach, couldnt stand up straight and I was dizzy. The nurses told me that the pain halves every day...and they were right. By day 4 I was walking straight, paracetamol for pain and feeling ok but very tired (do not under-estimate how tired you will be).
Aesthetically the new breast takes a while to settle (It swells up, feels hard and strange). It is bigger than my other breast but even so, in a low cut top it did look like I had 2 natural breasts.
The wounds were glued and didnt cause any problems and look neat.
My tummy is flat and I have a new belly button. It feels tight but when I start walking that soon goes. I have to wear a corset thing they give you for 6 weeks and no lifting/lugging. Sneezing and coughing hurt at first but now no problems. Sleeping on my side was tricky at first but ok now and you have to do shoulder excercises to stop getting stiff.
I have been told to wait at least a year for a nipple as it takes that long to adapt.
Now (4 weeks later) I am walking 3 miles a day, resting and feeling very good.
I am so glad to be rid of the prosthesis that I wore for years. I feel, for my part that I am now "done and dusted after having cancer"
I am 41 and looking forward to getting on with my life.
Hope that helps a bit

Hi all.I had breast cancer when i was 27,there is no family history.
I had double mastectomy even tho only one was affected and had the implants kind of "put in" to the outer shell of the breasts iyswim.
I have never looked back.I have had far less worry because of it and have even had 2 more dd's since.Its a great option i think.
I was never tested as the genetisist said because i was so young it would be a gene even if not one of the 2 main ones.
teamonster do you mind me asking about your ovary removal,was it due to the risks? I have been thinking of it,i currently have yearly ca125 bloods and a scan.My dr just said that i could have some hrt so am re considering it.Anything to add?
Can i also say op that as for shape and appaearance,i have no nipple on one side. Got divorced soon after,had some "naughty" years and am now remarried to a gorgeous younger man-just so you know it doesnt necessarily knock your confidence

at the flat stomach

I cookiemonstress.

I am a breast cancer and reconstructive surgeon. I will be less placed to tell you about the detail of recovery than some of the ladies here who have been through it all but hope I can tell you some of the stuff about the different surgical options.

Firstly as someone has already mentioned you should ahve been given the opportunity to go to a support groupwhere there will be ladies who ahve gone through various breast reconstructions so that you can choose for yourself what you think will work for you? If you haven't been offered this then I would contact the hospital and ask - my patients find this really very helpful in deciding on what they would like to go for. The breast care nurses will probaly be able to put you in touch with a support group if they haven't already.

Secondly given that you are having both breasts removed one major issue which is that symmetry will be taken care of. One reason why the diep flap (stomach operation) is so good is that as you don't need an implant it ultimately looks and feels much more like a normal breast than one that is reconstructed with an implant. It will also change as you gain or lose weight so the end result is much more natural and much more likely to match a normal breast which is a consideration when you are having a reconstruction on one side only.

There are basically 3 main options for you.

1. Implants only. This is the lowest risk operation and the quickest recovery. You haven't mentioned this in your op so I don't know whether you have already discounted this or if there is a reason why it is not suitable for you? Your breast won't look as natural in shape as the other options although there are implants that are shaped more naturally and not the circular ones that people usually associated with 'boob jobs'. However excellent results can be got from implants and this is a good option if you want a relatively small breast and your priority is a quicker lower risk procedure with a faster recovery. Complications include infection, contraction of the capsule around the implant which can distort the shape and the resultant need for further operations to correct this. Implants also only tend to last about 15 years so you are looking at needing them replaced in the future which would involve a further operation.

2. LD flap (back one). As someone has already mentioned this isn't a good option if you are very sporty as it takes a muscle from the back to reconstruct the breast. Normal activity including exercise and you wouldn't notice though. The addition of this flap to cover the implant makes it slightly more natural shape and feel and can add a bit of volume to the breast meaning that you can make a slightly larger breast than would be possible with implants only. The downside is that you will have 2 long scars on your back, one on each side, where this muscle is taken from although usually these can be sited under your bra. There is a failure rate (where either part or all of the flap doesn't 'take') of about 1-2% so obviously most people are fine but if this happened to you you would in all liklihood need more complex surgery to correct it which may involve several operations. Other complications are all those involving implants as I've listed above, and also you can get fluid accumulating under the scar on the back. This isn't harmful but can be painful and if this is the case it can be taken off with a needle (some people need this several times) but the body will ultimately sort it out for you over time.

3. DIEP flap (tummy one). As I've already mentioned this gives the most natural feeling and looking breast because you are only using normal tissue and not implants. You also get the side benefit of a tummy tuck which only you know whether you will benefit from or not! You will have a long scar on your tummy from one hip to the other, but this will be usually hidden in your bikini line. You mentioned a tatoo - you will probably lose this if it is on the lower part of your tummy below the belly button (or it may be moved to your breast depending on whether they use the skin from your tummy too in the reconstruction). When this works it looks fantastic and it is, purely on appearance, the best and most natural looking breast. However, the flip side is that it is the most risky operation. It takes upwards of 8 hours, so the general anaesthetic risks are greater than compared with the other 2, you may need to stay in the high dependancy ward overnight after, and because the flap is completely detached from you and then rejoined with microsurgery there is a greater risk of failure (about 5%). If it fails the consequences are similar to the LD. Sometimes (not commonly) the blood vessels are too small and in this case it can be necessary to take part of the underlying muscle which has bigger blood vessels and this can ut you at risk of getting a hernia on your tummy afterwards which can need surgery to fix it. This is not common though.

There are other, less commonly done, flap type operations where tissue is taken from different parts of the body that you could discuss with your consultant if you wished but these 2 are those most commonly done for breast reconstruction.

Sorry I think I have waffled on enough! In summary i think any of the above options are just as good depending on your approach to risk and how important it is to you for the breast to look and feel natural. I should add that all of these options are equally good in terms of how you will look ina bra, to anyone who would see you out and about.

I have tried not to be too medically - apologies if I have not succeeded. Feel free to PM me if you'd like more info or have more questions. And good luck!

Sorry don't know why that very long and waffly but hopefully useful post started with 'I cookiemonstress' . Think I meant to say 'Hi cookiemonstress' but given that I started typing sometime last week I can't remember!

cookiemonstress - if it's any help you might nip to the tamoxifen thread - we are good for handholding anyway ! Lots of good thoughts to you anyway