Double mx - any advice?

Going through breast cancer treatment Surgery
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Hi ladies,

I’m currently having chemo for triple negative bc diagnosed in feb. Because of the size of the original tumour I’ve been told I would need a mastectomy on the cancer side but because I’ve tested positive for a gene mutation - not BRCA1/2 but something called PALB2 - I’ve been told that one way to reduce the risk of a second primary is to have a double mastectomy. The choice of whether to have both done together, or stagger the operations, seems to be mine to make - along with what kind of reconstruction etc. It’s a lot to take in.

I’d be very grateful for anyone’s experiences of a double mx - recovery time, coping after surgery etc. My understanding is that it’s a longer op and longer recovery but also can imagine hard to deal with two sides out of action at the same time, and drains etc. Or anyone who opted to have two surgeries a few months apart - did that help? Or was it hard having a second op hanging over you?

Thanks for reading!

Tg xxx 

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@Teagold  - I’m sorry I can’t help with your question of a double mastectomy as I had a single one, but if I can help with any questions regarding reconstruction, let me know. I had an implant so would be happy to discuss that option with you. I also wanted to wish you all the best with your surgery and hope someone else will be along soon to discuss a double mastectomy. Evie xx

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Hi Teagold

I had a double mastectomy in January this year. I don’t have any genetic mutations, but because of past treatment for Hodgkin’s Lymphoma, my risk profile was apparently just as high, if not more so. In my case, it was a skin and nipple-sparing mx, with immediate implant reconstruction. I’m really happy with how well it went, and the result.

Personally, I wouldn’t have wanted to do the two sides at different times. That said, I’d already had a lumpectomy last April, then a reduction in September in prep for the mx in Jan. It was tough, yes, having those hanging over me. Each recovery was tinged with “until I have to start again”. The feeling this time of being free of the ‘next one’ was quite heady!

I’d also say I think - for me - there was less of a shock being able to look down and see a matching pair of new boobs, both at the reduction and mx stages. I personally think it would have been really weird to have new/old comparison at that point? With all due love to those ladies with no option on that, of course. But I was going to end up with a whole new pair, regardless, and I think it helped me personally that they were just ‘there’ and no getting used to one while I could see the other, then having to readjust again? 

With the lumpectomy I did get to try the single-side op, and while yes both at the same time was probably a bit more awkward - you don’t have a ‘good hand’ to use more, no option but to sleep on your back - those felt like small things to put up with for a relatively short time, all in all.

For me, I stayed in hospital while the drains were in, which was 4 nights. I had help at home from family for about the same again afterwards, and then someone popping in twice a week to help with housework after that. Well worth noting that that was with implants, not own-tissue recon, where the donor site would have been a third wound to deal with. I know I started properly cooking again at about the 9-10 week mark, so that’s probably a good sense of timescale on my recovery. I’m still happy to let someone else do the lawn mowing, right enough  

Absolute caveat that this is my experience and opinions and what is best for you may be quite different. I’m more than happy to answer any other questions you have, either here or PM.

Hang in there!