Preventive Mastectomy - Experiences?

[DecisionTime17]

Hi. I am 44, with a very strong family history of breast cancer. I was referred for genetic testing but for various reasons the geneticist didn't think it would be useful for determining risk in my case, however based on the pattern within the family he estimated that I have about a 50% risk.

My consultant has offered me the option of preventive mastectomy and reconstruction. I have two young children. I want to go ahead with this option to reduce my risk to 5-10%. My only reservation is fear about the surgery itself. I've never been under anaesthetic and I am overweight / obese (on the borderline in terms of bmi). I have a thyroid problem and while I can lose weight it takes a very long time and if I go ahead with surgery I'd like to do it within the next year.

Has anyone experience of this? If so I'd be so grateful to know about the type of reconstruction you had, if the surgery itself was straightforward, what the recovery was like... And are you glad you did it?

Thank you

I've had a mastectomy with reconstruction.

I had expanders put in under my muscle. The expander is pumped with saline in stages to stretch the cavity for the implant to go in during a later surgery (I'm having this done in a month or 2).

It was a painful process. It took a few months to heal, if you need an expander they can be very uncomfortable (I hate mine with a passion and if I had my time again I would have just stayed flat).

If you have young dcs you'll need a lot of support for at least 3 weeks after returning from hospital including driving.

Sleeping is horrible, I had all of my pillows stacked so I was almost sitting with my arms supported for about 3 months! I'm buying a wedge pillow for the next op.

Are you having the surgery done privately?

I've had a mastectomy without a reconstruction. And I'd say think very carefully about having a reconstruction. It's a lot of surgery, for what?

The mastectomy is far, far less surgery than the reconstruction.

Thank you both so much for responding. I'm sorry for making the assumption about reconstruction, that's the way it was presented to me by the referring consultant, but when I have a consultation with the surgeon I imagine going ahead with the mastectomy but not the reconstruction will be an option to discuss.

I am on the public system where I live, but not in the UK.

Tulip your recovery sounds really tough - I hope the recovery from your next surgery is as quick and as smooth as it can be. I am very grateful to you for telling me you'd stay flat if making the decision again, and to you Salty for asking me "for what?" would I be having the more complex surgery involved in reconstruction... Food for thought.

I've only had one side done (for cancer, so not like you). And I just wear a prosthesis in my bra. And it's absolutely fine. I just wear normal bras and have no problems at all.

I need mastectomy swimwear. And I obviously can't show my cleavage, so always need to wear clothes that cover my bra - but that's how I always dress anyway, so doesn't bother me.

But I'm amazed at how absolutely fine wearing a prosthesis is. No bother at all. And I'm fairly well endowed. A DD / E cup.

You probably have no idea what a breast prosthesis actually looks like, so here's a website to one brand: www.amoena.com/uk-en/breast-forms/

(The NHS pays, so they're free to me. I get a new one whenever I need one - which is meant to be every 2 years, but I generally go longer.....)

Thanks, Salty. If you've needed any further treatment I hope that you got through it all okay and have returned to good health and peace of mind. It sounds like your mastectomy was several years ago so it's great to have the positive perspective on using a prosthesis from someone who knows from experience what it's like. My mum had one and hated it, so hearing a different opinion on them is good.

They've probably changed a lot since your Mum had one. They're now much lighter and don't require special bras.

I've worn one for 20 years. I was 23 when I had my mastectomy. And I've never had any problems with it.

A reconstruction was pretty much assumed in my case. I didn't think to question it (I also had cancer).

I feel that I personally don't need breasts, and the extra surgery, longer recovery, lifelong monitoring isn't worth it to me!

I know some women seem very attached to their breasts, this would colour their view of reconstruction.

Decision, I am one of those women who was attached to their breasts so when I had a single mastectomy last summer I had an immediate reconstruction using tissue from my tummy. It was a major op (8 hours in theatre) but 6 months on i have absolutely no regrets and know for me I did the right thing.

What I think you need to take from our replies is there is no right answer. Only you can know how you feel about your body and guess how you might feel post surgery.

I don't envy you, at least I had no choice over having the mastectomy in the first place, and wish you well with your decision

I had a positive genetic test ten years ago when I was 26 and prophylactic surgery ab couple of years later when I was 28 with a reconstruction (LD flap - using back muscle which I think is not that common now). I was single and pre-DCs.

It was a huge surgery, 12 hrs, 12 weeks recovery. I then had another big surgery with fat transfer to cover a bit of implant and put in permanent implants a year later. I think, with the benefit of hindsight, I wouldn't have had the second surgery and would have accepted a less-than-perfect aesthetic, my surgeon was keen to get the best possible 'look' because of my age, I think.

I had a few years (especially while dating) of being very self conscious about my foobs, really struggling to find the right bra/accepting that only one style would work.

Had to deal with other people's awkwardness when pregnant and talking about feeding. But that's momentary!

Now though, I don't even think about it. My foobs are just part of me, I'm way older than my mum and sister were when they got ill. I have 2DCs. etc. It was a huge part of my life for a couple of years whilst I had surgeries and appointments and had to tell my friends etc. But it's over now and I'll feel safer because of it.

Do not underestimate the recovery time and the amount of mental and physical support you will need.

I can't comment on not having recon, because I never took that option... I think now, I might.

I've not had my surgery yet but planning it, immediate implant with no expander and the pig skin 'lattice' thing. My mum had expanders and said it was uncomfortable, she had hers quite a few years ago now and I know a couple of people who've had it more recently and recovery times are not so long now. TRAM flap and back fat/skin/tissue surgery is much more of a big op and takes longer to recover from, my aunty had it and she was off work for quite a while. BRCA umbrella is a great site where you can read stories and see pics of surgery before and after. Good luck!

Thank you all so much for sharing your experiences