Has anyone successfully requested a bilateral mastectomy?

Sorry, you are in this position, it must be very tough and yes, you just want/need to be there for your child. I completely get it.

I had a double mastectomy, and I had to argue very hard for a double as there were only tumours in my right breast. My position was different to yours a) I was 70, b) it was covid, and c) I wanted it because the size of my breasts was very large 'h' cup.  I also had been denied any reconstruction. I think in part I succeeded because it was covid, and it was the easiest operation to perform (I was having to argue for any operation at all as surgery had been put on hold). Initially, it was a single mastectomy and a reduction on the other side. To get my way, I wrote to my MP, to Pals and to the chief executive. I would do this if you hit problems. Plus, if you can stress you want it for your mental well-being.

Things to consider are, you will get reconstruction? Whereas at my age it did not matter too much, being flat would have affected me had I been younger. Also, if you have another child, you won't be able to breastfeed. With no breasts, there are no yearly mammograms, which means no warnings of any developments. I do worry that there could be some secondary growth that I won't know about until it is too late.

You need an unbiased expert to listen to your concerns rather than a doctor delivering the party line.

Lots and lots of luck and a long and happy life going forward with your daughter xxx

I am a BRACA 2 carrier and so they agreed a bilateral mastectomy.  At the time I was 70 years old and my breasts had fed 3 children!

I was clear I wanted reconstruction at the same time which they did with implants.

Keep asking the questions so that you are clear what they will and will not do.

All the best

Thank you for your response. I hadn’t thought about other options if they refuse (which I expect they will). That is really helpful, thank you. I did mention i would rather a double when told it had came back and she said i would need a mastectomy this time but was told they don’t recommend surgery on healthy breast tissue. 

I have emailed a letter to my oncologist today to explain my reasons in writing as I think you tend to forget once in the room and it means they can hopefully consider before my next appointment and at MDT if required.

Thanks again for your response and hope you are well now xx

Thank you. I had not long finished breastfeeding and my initial symptom was bleeding from my nipple so really expected it to be related to breastfeeding!

I have had my right nipple removed already and am not planning on falling pregnant again! I haven’t had the genetics test but have been referred and am compiling the form as we speak.

Thanks again for your advice and response xx

I have not been in this position as I only needed a lumpectomy. Other than where there are gene defects, people seem to be more likely to get agreement by arguing symmetry / pain and difficulty from having 1 heavy breast, rather than fear of cancer in the good breast. 

When my breast surgeon recommended a mastectomy I immediately asked if she could “take both” she replied straight back with “yes, If that’s what you want” no questions asked, in my opinion they had served their purpose so remove the risk, that’s not to say I don’t struggle with being flat because I do, a Diep was first looked at but unfortunately I didn’t have enough fat even though I said I was very happy to have small breasts, implants could have been an option after radiotherapy but unfortunately my cancer has metastasised to my brain and lung. I really hope that they agree with you and you are successful in receiving your double mastectomy x

Hi,

You might want to ask your oncologist about statistical risk and what difference it would make to have a double mastectomy to your long-term prognosis. 

My medical team told me the risk of breast cancer in my other breast was about the same as for a woman my age who had had no breast cancer (I have no family history of breast cancer). I think the risk might be something like 1% or 2% more than a woman who has had no breast cancer and no genetic link, and over a period of 25 years the risk is maybe 10% more, but you might want to double check this - I just did a quick internet search of medical sites. 

If this doesn't reassure you, then obviously go ahead and ask for a double mastectomy. 

Hope this helps.