Clueless about reconstruction (or not)

I'm pursuing prophylactic double mastectomy due to a 1 in 3 risk of breast cancer, shaded a bit by my mum's breast cancer not showing on mammogram, so screening mammograms will never feel as reassuring as the data says they should be. I have an appointment with a surgeon on Tuesday. I'm disabled (wheelchair user), so I know some reconstruction options are off limits but not much more than that. It's also a motivating factor in aiming to prevent rather than spot early - I don't want to have to make decisions that might affect my future independence and mobility at speed.

Coming to the conclusion that prophylactic double mastectomy was what I wanted to pursue was all made with reconstruction in mind. My mum randomly said a few days ago, why get a reconstruction when you'll be symmetrical. That made me feel that she simply doesn't get it, but I realised it was worth thinking about. I feel like it would make me always aware of what I've done, but then I think I would be anyway. I'm single and somewhat resolutely so, I don't have to worry about what a partner thinks. I suspect being me, I'd go without a prosthetic most of the time, which is a big step to take. 

Right now I have zero emotions, but I expect that won't be the case throughout the entire process, there will be some sense of loss. My mum didn't have an especially bad time of things, especially compared to what some ladies go through, but changing the statistics on that will be a huge relief, I'm getting pretty close to her age at diagnosis, her tumour may well have even started to grow at my current age, so that cloud over me is getting bigger and greyer.

  • Hello and thanks for posting

    I am sorry to hear about your mum's situation and appreciate the decision you have made to have a mastectomy can't have been an easy one.

    Whilst you may feel you have no emotion about this at the moment as you say at some point you probably will have a sense of loss and this is very normal.

    It is important you have people who can support you along this journey and help you to make an informed decision about a possible reconstruction as well.

    Sometimes it can be helpful for people to talk with someone else who has been in the same situation to understand more about what to expect and to feel better prepared for what will happen. This may be possible through the team involved in your care or the charity Breast Cancer Now have a service called 'someone like me' here that can put you in touch with someone.

    We have information about preventing breast cancer here and breast surgery here.

    Hopefully there may be other people who will also drop in on this post and say hello and share their experiences with you.

    Please get back if you want to and you are also welcome to call our helpline on 0808 800 4040 Monday-Friday 9-5.

    All the best

    Naomi