Elective double mastectomy - anyone with experience/advice?

[BlowMeDownWithAFeatherMissis]

I've just found out that I have a high risk of breast cancer, not due to family history but other factors, particularly benign breast disease. The consultant I saw advised me to start taking meds, but I'm thinking about asking if I could have a double mastectomy instead. Sorry if this sounds a bit mad and extreme - but am lone parent to two small children and if I did this I would almost completely eliminate my breast cancer risk, which is currently 40% lifetime risk. Have any of you done this as a preventative measure? I'd also really like to know what people who've had double mastectomies feel about the operation and how recovery went, which type of reconstruction you had (if you did).

I have but I'm dashing off to work, I've put this to remind me to reply when I get home!

Thank you!

Hi
I had an elective double mastectomy four years ago because of BRCA2. I opted for nipple and skin sparing surgery with silicone implants due to the simpler, one site surgery and quicker recovery (had a very young child at the time). No regrets here, even though my recovery wasn't as straightforward as I had hoped (needed several surgeries instead of just one) and would do it again in a heartbeat. Obviously risk reduction is the main thing but my cosmetic result is good too. BRCA Umbrella is a good resource with reconstruction pics and advice.
Feel free to pm me if there's anything specific you'd like to know

HI Blowmedown

I had a double mastectomy following breast cancer 2 years ago. I didn't have any reconstruction, mainly because I've also got young children and wanted the quickest recovery time possible. I'd had nearly a year of chemo and to be honest was totally fed up of it all. I was also nearly 50. I was told that I could have reconstruction anytime in the future if I changed my mind but I haven't done so far!

From a recovery point of view, the first week was a pain as I had 3 drains in ( 1 on each side and 1 from where I had the lymph nodes removed. I wasn't actually in any pain, just sore but the drains were a pain and I was worried that they would get pulled out - especially as the kids were very cuddly!

Once they were out, recovery was really good. I did have to take it easy and not lift anything heavy and remember that I'd had major surgery and would be very tired but having had c-sections with my boys, this was a doddle compared to those!

I don't know if you've seen the tamoxigang thread on here, it is for people with all sorts of cancers a lot of whom have had mastectomies but we're a very friendly bunch and I'm sure everyone would be very happy to share their experiences.

Please feel free to ask any questions, either here or by PM. It's a big decision, I felt bombarded with information but in the end went with my gut feeling and, so far, I don't regret it at all.

Hope this helps

I decided on a double mastectomy instead of minimal invasive lump removal. BC is in the family (DGM, DM and me) and I had two under two at the time.

I decided against reconstruction because it simply felt more like me (had a small A before children and D after). The OP was easy and unproblematic, recovery was fine - chemo and tamoxi treatment went better than expected.
13 years ago today and I'm still alive.

Started out with a false negative mammograph as well.

I should add that my post surgery complications were due to reconstruction rather than the mastectomy itself. Part of me wishes I had been brave enough to forego the reconstruction altogether as i have had some issues with my implants rotating and more recently swelling up for no reason (and frightening the life out of me!).!
At the time though, the recon was the right thing for me and made the decision to have the surgery easier as I knew I would wake from the op with breasts, of sorts.

Thank you all so much. I haven't looked at the tamoxigang thread but will def do so, thank you for that. I am really hoping that I will be allowed to do this on the NHS - most of the stuff on the NICE guidelines on preventative mastectomies refers to people with one or other of the risky genes but my risk is classified as high so I hope this is enough. I really feel that it's the right thing for me to do. My dds are 8 and 6 and my older one has SN. Kids are donor conceived so no other parent at all.
The thing I feel very torn about is whether to go for reconstruction or not, and it's interesting reading your responses - I have fairly massive boobs - 34FF and I'm not sure what I will feel when they've gone if I don't have reconstruction, but I also really like the idea of quicker op and recovery time. I know you can go for reconstruction later but is it meant to be a better result if you do it all in one go? I quite like my boobs though I would like them to be smaller as they get in the way and clothes often don't fit etc! I'm a bit worried I might regret either decision, to be honest. I don't think I'd regret the mastectomies though.

My benign breast disease is also making my breast tissue very dense and hard to read on mammograms and I think it would always be a worry even with regular mammograms.

Uwaga - that sounds scary - Alien style! Did you need more surgery again? I really understand wanting to still have breasts though. Thanks for the link - haven't seen that site before in my googling!

I had mastectomies and implant reconstruction due to cancer. I went from 34FF to 34D and love the smaller size. I can even run now! I had to give away most of my old tops to a charity shop though! Happy to answer any questions if I can help further.

If you can live with no reconstruction without ruining your quality of life (whatever that means to you personally) then yes, no reconstruction is the easiest to recover from. My mum had it, she was actually 100% recovered in 2 weeks (single mastectomy though). Also know friend of friend who recovered in 2 weeks.

They prefer to reconstruct at the time of mastectomy if you're having recon. For those that have the mastectomy for a cancerous tumour and then go on to have radiotherapy, that makes future reconstruction much harder. It's a personal choice, I know I would go for not reconstruction but you need to make a choice that suits you.

There's definitely a lot to think about. For me I think the fact that I could have reconstruction meant that I got on with the surgery sooner than I might have done if I'd had to get my head around no breasts at all. Without an actual cancer diagnosis there's less sense of urgency I suppose.
The main thing to be aware of is that although my reconstructed breasts look pretty good, I have virtually no sensation in them and the implants make them quite cool to touch most of the time. My son also complains that they don't make a very comfortable pillow! They're not soft and warm like real breasts, but on the plus side the firmness means I don't need to wear a bra any more.
Luckily I didn't need more surgery with my recent scare, they just drained off some fluid (which they tested for infection and cancer - all clear) and so far so good. With implants there is always an element of worry, there's a foreign body inside you after all, but problems years after surgery are very uncommon. I decided during the recent scare that if there was any doubt about the implants viability I would have them both removed and not replaced and I had come to terms with that. My main worry was that I would look 'dented' rather than flat, which can be an issue if you deconstruct (where the implants have been pressing into the chest wall), but in the event I'm sure I would have come to terms with that too.
Best of luck with the research and decision making - let me know if you want to know anything else.

I had it too. I had cancer in my right breast aged 26 then discovered I have the brca1 gene so had double mastectomy with recon which is pretty good.
I had my ovaries removed about two years ago aged 46.
Happy to answer questions or just chat.
I
Had it done on the nhs at my request.

I had fat transferred from my tummy to around the edges of the implants, they look more natural now and are warmer and I suppose comfier too!!

Wish they'd taken done fat from my tummy
I have saline implants and they are pretty natural and have been in for over 20 years now.

Hi OP I am a breast surgeon. I think perhaps you just need to backtrack a little, if you do not have a strong family history of breast cancer and do not have one of the genes associated with breast cancer it's unlikely any benign breast disease would raise your risk of breast cancer high enough to consider bilateral mastectomy. It sounds as if this is the advice you have had from your own breast specialists too. Having dense breasts is not a reason for mastectomy, MRI scanning in addition to mammograms is useful here. Perhaps you need to discuss with your breast team exactly what your risk of breast cancer is and think carefully? Bilateral mastectomy and reconstruction is not without risks and the pros and cons need to be carefully considered .

Thanks userlongnumber who is a breast surgeon - great to get your perspective. With the information I have read so far, it is stated that women with a 'high' or 'very high risk' may choose elective surgery - I guess the question is how high is high? My risk is apparently 40% over my lifetime - this isn't just due to the benign breast disease, it's ramped up by a few other things like my mum having breast cancer and my having my kids too late in life to have a cancer-risk-reducing effect. I am sure lots of other women have a higher risk which is partly what I'm asking about - did those of you who have had elective surgery have a much higher statistical risk than this? Is 40% not really that high then? The alternative is meds (the ones for post menopausal women) which reduce risk by half but affect your bones and commonly cause joint and muscle pain and there are no long term follow up studies for them yet either. I'd take them if no alternative though for sure.

The dense (and lumpy) breasts really are a problem though not just for mammograms but for my chance of detecting any new lumps which is incredibly difficult and stressful. I can never be sure which lumps are old and which new!

Arghhhh..

If you have not tested positive for one of the breast cancer genes then the fact your mum had breast cancer does not put you at high risk of breast cancer. Breast cancer is common and many women have a close family relative affected. Having children late in life is not a significant risk factor, in fact having children at all is protective against breast cancer as compared to nulliparous women. I am not aware of any benign breast condition that would give you a 40% lifetime risk of breast cancer . I am concerned you have over estimated your risk of breast cancer and I would encourage you to discuss this again with your local breast team. I doubt if an NHS breast surgeon would think it appropriate to offer you prophylactic mastectomy .

The 40% risk was calculated by the consultant surgeon not by me - sorry if I haven't made this clear. So it isn't my estimation. I fully understand that having children late in life isn't a risk factor, rather it means that having had children does not reduce my risk as it would if I had had them earlier in my life. I agree that my mother's breast cancer doesn't put me at high risk - the surgeon I saw suggested that it slightly raised my risk according to the model of risk calculation he used.