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Preventative mastectomy due to faulty BRCA1 gene

(13 Posts)
banananugget Thu 12-Jan-17 19:35:24

I posted before about getting tested for the faulty BRCA1 gene. I found out I have the faulty gene and have been referred for a preventative mastectomy at the Royal Marsden hospital. I was wondering whether anyone else had any experience of this and the process? I am obviously very nervous but there is so much information around I don't even know where to start looking.

In particular I'm wondering how long after starting the referral process did you have surgery? What was it like? How long was recovery? Are you happy with the results? I am opting for reconstruction but have no idea what type yet.

Thank you in advance for any responses smile

RandomMess Thu 12-Jan-17 19:39:23

I was told from the first referral for preventative mastectomy op (after receiving BRCA 1 positive) to the operation was usually around 12 months. Much of what would work for you is determined by body shape etc. so I think best to go with an open mind and see what the surgeon says. Apparently there are options as to how much they take and what risk that leaves you with.

Sorry to read of your gene testing outcome.

RandomMess Thu 12-Jan-17 19:41:12

Although I'm in a different area to you, the time delay is due to the extensive counselling I believe.

mintyneb Thu 12-Jan-17 20:09:50

banana I don't have the gene (well have never been tested for it) but am just going through treatment for a second bout of breast cancer. I had a mastectomy and reconstruction at the Marsden last summer. I had a DIEP reconstruction where they take tissue from your stomach to create a breast (bit like having a tummy tuck) and although it was major surgery and I have lots of scars I can't fault either the surgeon or the team who looked after afterwards on the ward. The plastic surgeon was/is just brilliant in my book and very caring.

I need to have some adjustments done (all part of the process) but have been told that as they will be cosmetic I will have to wait longer as women needing surgery to remove cancer (as I was last year) take precedence. That could be another reason why there is a wait for preventative surgery.

You will be in good hands at the Marsden and I wish you luck with whatever route you go down

banananugget Thu 12-Jan-17 20:28:58

Thank you for your responses. How did you decide what type of reconstruction to have? (Sorry if this sounds ignorant) are there different types suitable for different people or can you have any available option? Where did you find out about the options? I know there are a lot of websites but were there any particular ones that were useful?

mintyneb Thu 12-Jan-17 23:06:36

If you have a mastectomy as a result of cancer you basically have 3 broad options - no reconstruction, recon using an artificial implant or recon using your own body tissue (from your tummy or bringing muscles round from your back - as recently revealed by Anastasia on Strictly). You can also have an immediate reconstruction in the same operation as the mastectomy or you can delay it until such time as you feel ready.

With surgery for cancer, it is not unusual to lose the nipple during a mastectomy but I suspect that with preventative surgery they would do their best to preserve it.

All of the above has an impact on the best type of reconstruction for an individual and the amount of scarring involved.

I personally was not recommended to have an implant as I'd previously had radiotherapy to the breast area and this affects how the body responds it. I also preferred the idea of using my own tissue.

I only really looked at the cancer websites such as Macmillan and breastcancercare so can't recommend a good place to go.

The best thing would be to see what the team at the Marsden have to say and take it from there

Isadora2007 Thu 19-Jan-17 14:44:29

I have had previous radiotherapy that means I am of similar high risk of BC as someone with a faulty BRCA gene so have also been offered a risk reducing bilateral mastectomy.
I wondered about the nipples but forgot to ask the surgeon. I would only be able to have the reconstruction with own tissue not the implant. Or the non reconstruction route.
I'm 39 with four DCs. And a hubby.

weebarra Thu 19-Jan-17 14:50:47

I'm BRCA 2 +ve and had breast cancer before my mastectomy. Like mintyy (hello!!), I also had radiotherapy so wasn't a good candidate for implant reconstruction. I opted not to go with any and just wear prostheses.
I have friends who have had recon, some who've had flesh taken from their back and some from their stomachs. The stomach one takes longer to recover from I think.

FannyWisdom Thu 19-Jan-17 15:03:07

I had silicone implants (bimast almost 20 years ago) the round false shape (I had big boobs and they saved my nips) scarring was ok and breasts didn't look obviously round and shape wise I was similar to pre mas.

Then I had a new set of teardrop implants (old ones were pip) these I hate.
Heavier, edges, flip upside down, one up one down etc. Not sure if they suit better with breast tissue remaining.

If you decide on implants consider the shape imo after a mastectomy the shape is less forgiving.

Isadora2007 Thu 19-Jan-17 15:17:40

Really stupid question here but do they keep your skin and nipples?

Inhave massive boobs (Gg cup) and wouldn't want huge reconstruction ones so what about spare skin??

javabean34 Sat 11-Feb-17 20:07:10

Like minty I had a mastectomy and immediate DIEP flap reconstruction, though not preventative. I was very lucky to have a great plastic surgeon and BC team looking after me (not at the RM but by all accounts RM is a centre of excellence for BC) and I could not be happier with the results.

I was apprehensive having never had surgery before. The DIEP meant a longer recovery time, and the large abdominal incision meant I had to be bent over walking and uncomfortable lying down as I couldn't lie flat. While I was mobile within a week and able to sit and walk upright in two weeks, it took 5 to 6 weeks to really start feeling normal again. Before then, I had to take it easy: no housework, cooking, lifting things, driving, etc.

I chose DIEP as I wanted to use my own tissue. Implants need replacement, albeit after years; but as minty said, there may need to be further adjustments, so it's not like you will be absolutely be done with one surgery for DIEP, or for most other options for that matter.

The other 'own tissue' option I considered was using fat & muscle from my back (an LD flap), but I felt taking the fat and skin from my spare tyre and using it to construct a new breast was an elegant solution. For me, it was well worth it for the 'tummy tuck' effect. It's not the same procedure as a tummy tuck; my scar is not as discreet, but fat gets taken from the belly area, which is a win in my book.

The fat feels and behaves like normal breast tissue, and I don't have to worry too much about over-excited children bumping into it. I'm also a front sleeper, so again the fat is more robust than an implant in that regard.

Surgery is very much individualised so do talk to the surgeon to ask about preserving the skin and nipple, and what they recommend. OP and Isadora, hope you find an option that works!

javabean34 Sat 11-Feb-17 20:31:26

banana, just read you asked about an informative website

Have a look at this comparison chart:

Explanations of the different techniques here (note US site):

elevenswan Sun 12-Feb-17 17:45:13

Hi banana, I'm in a similar boat to you, I have BRCA1 and am currently planning my surgery. My doc said I would only really be able to have implants as I'm slim especially on my top half.

However I've recently developed a weird mark on my boob and I'm awaiting a biopsy etc at the hospital. Bit worried that if it is cancer my reconstruction options may be more limited. But guess will have to cross that bridge if and when I come to it. I'm only 29 and single so having no reconstruction would be really really hard for me sad

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