Mastectomy

Hi suziloo 

I am sorry you are needing a mastectomy.  I haven’t had this experience but it’s my understanding that the NHS is very reluctant to remove healthy tissue unless it considers the risk of cancer is high (eg for people with BRCA gene defects). The operation itself carries risk and therefore can’t be done without good cause. I am sorry you are in this situation but having cancer in one breast doesn’t increase your chance of getting it in the other. I think people with large breasts can sometimes make an argument about future issues from not being symmetrical (back pain etc) but it always involves a psychiatric assessment which can delay treatment. 

I would suggest having a full and frank conversation with your surgeon.  I had a lumpectomy and then was told the margins weren't big enough so another was needed.  I opted for a mastectomy to avoid radiotherapy due to a pre-existing condition.  Research the pros and cons and talk to the surgeon and I'm sure you can come up with an amicable solution.  I know for myself, if mine came back in my remaining breast, I'd opt for the mastectomy immediately.  No option is easy so research which will help you x  Good luck.

Hi suziloo

I had a double mastectomy with no reconstruction. Originally, I was supposed to have one breast off and the other reduced. I was a 38 H/J cup. The surgeons did not want to remove a healthy breast. Covid intervened, and despite being told it was urgent, my operation was put on hold. After writing to my MP, the chief executive at the hospital and PALs, I eventually got my operation 4/5 months later. When writing to these people, I requested not only that my operation be not put off any longer, but that it would be a double as one lop-sided heavy breast would damage my posture and aggravate my osteoarthritis. The chief surgeon at the hospital was a woman and could empathise.  Her only condition was that I was happy not to have any reconstruction. Given that I was going into my 70s, this wasn't such a big issue for me. If I had been younger, I might well have felt differently. Also, I was overweight, and so they weren't keen to do a reconstruction in the first place. I don't regret my decision, and to be honest, rarely wear the prosthesis that were given to me. I do aqua aerobics 4-5 times a week, and for this I have " knitted knockers" provided by https://www.knittedknockers.org/. I like these as they are very light and easy to put in my swimming costume. 

Because I had both off, I have a large scar going across my chest, but the upside was that drains weren't necessary. I had 3 lymph nodes removed, which were fortunately clear. 

One thing that sometimes bothers me is that because I have no breasts, I never have a mammogram (yes, nice in itself), so I have no way of knowing if the cancer has returned anywhere else. I am now nearly 7 years from diagnosis and well. 

Think carefully about what you want, then marshal your reasons and if you get nowhere, then write to PALs, your MP and the chief exec. It worked for me.

Good Luck x

Hello, sorry you are facing this, I was facing a similar situation. Recurrence of high grade DCIS after 8 years and due to previous lumpectomies and radiotherapy LH Mammogram advised with  reconstruction a few years down the line. 

After much thinking and researching I felt strongly that best for me in terms of stays in hospital, fear of return (I have highly calcified breasts which are difficult to interpret in scans) is to have both sides removed with flat closure. Symmetry and simplicity feel like an easier thing to adapt to and there should be upsides, like no more mammograms or fears and no more bras except for dressing up! Many of the women who comment on life after bilateral mastectomy say they seldom bother wearing prostheses. 

My surgeon is female and very empathetic, she warned me at length that some people regret this and find it difficult but she accepted my deeply felt preference. I have the op 23 June and I know there will be a time I'm devastated and grieving, but I think it will be easier psychologically and practically in the future than keeping one side.

My impression is it is a bit of a lottery whether you are allowed this choice without fighting for it, and that male surgeons may have less understanding, for obvious reasons. 

It is such a personal choice that needs a lot of soul searching but I hope at least you get the choice.

Wishing you the very best. Xx