Second mastectomy preventive?

[Anita-B]

Hi ladies looking for some advice, had a full mastectomy and total lymph node removal, unfortunately due to small spread to my left hip was not able to have chemo or radiotherapy at this time as they want to keep this for a later date if cancer spreads to major organs. I am currently on Letrozole. I am considering a second mastectomy as a preventive measure, has anyone else been in this situation and made this choice or will it not make any difference. I just hate the thought of the cancer spreading to my other breast. Just feel I have no control over anything as my cancer has spread and don't know how much time I might have, I know it could be years and none of us know how long we have but I am really struggling with this. Thanks for listening

[moseypowell]

I had a double mastectomy in 2015. The surgeon wanted to do a lumpectomy and mastectomy on the other breast. Thankfully, I have a good friend who is a doctor and she advised me to go for a double mastectomy partly because of symmetry and also less risk of the cancer coming back. I have to say it's the best decision I have ever made. I am now more relaxed knowing it can't come back and just have to cope with Letrozole. I wish you all the very best and hope this helps. Love a Marina xx

[Debs1962]

My cousin's wife has just had second mastectomy, her choice as she wanted symmetry, but also she was unable to have chemo as after her first mastectomy had loads of problems, and missed the window of time to have it, when they removed the breast all was well no signs of cancer, but she did join a forum for both breast removal, can't remember name of it, but a lot of people who opted to have second breast removed, cancer was found in early stages, which is a worry!

I do think I would consider mastectomy on the other breast if given the choice. Xx

[blue_sky1]

I opted to have a 2nd mastectomy & immediate recon on my left side after treatment had ended and my first recon finished. No cancer was found in the left breast. I am definitely pleased to have done it as it removes the anxiety. However I wish I had had both done at the same time as my original mastectomy and reconstruction as different techniques were used which gave a different and asymmetrical result. I had a lat dorsi on the right side (the one with cancer) and the result was excellent. I now wish I had had both done using this technique at the same time. The surgeons really pushed for me not to do it, arguing that the breast was healthy and didn't need it, but I think they would have done it if I had stayed firm. They of course tend to look at it purely from an as needed health and time/cost perspective and don't always factor in the psychological impact of the appearance with clothes off! Best of luck. xxx

[Nixh]

Hi Anita - I too had a second mastectomy, 15 months after my first. Am also pleased I had it done, nothing was found but the anxiety of it returning there has gone. No more yearly mammograms or MRI scans (been having them since i was 25 as high family risk). I had both done the same way, skin sparing mastectomies with temp expander implants and am hopefully having final implants in November. I was originally having a diep, but decided I'd had enough, didn't want the long recovery so opted for implants instead. Some people say what a huge decision to make, but tbh it was a no brainer, the op was straightforward and as no nodes taken a quicker recovery than the first...

Good luck with whatever you decide,

Nix x

[julesab]

When I was first diagnosed and he said mastectomy I asked if he was removing both but he said no as it was not the genetic type ! Seven years ago I had the right mastectomy and lymph node removal but I had chemo and radiotherapy. I was on tamoxifen, this was all in London then I relocated to Lancashire and they changed the tamoxifen to letrezole which I still on. I no longer have to have yearly mammogram so all looks well. Good luck with your journey

[SuePS1958]

Hi Anita, I have not had a second mastectomy and look for info to help me understand recurrence better. This article was posted on facebook a few weeks ago by one of the leading uk BC charities - here is the link - I found it helpful thinking about things - hope you find it useful:

quivervoice.wordpress.com/2...

[Lainey66]

I made that choice right at the beginning when I knew I would be having a left breast mastectomy and total lymph mode clearance. Initially I was told "No, we do not remove healthy tissue!" I was adamant but still received a refusal. However I went away and did my research, garnered the support of my GP, researched statistics, and also investigated my options if having surgery elsewhere in the EU should my surgical Oncologist continue to refuse to remove both breasts. I returned to meet him and put my now very full folder on his table, discussed my research and then stated that should he not carry out my request, I would seek a centre of excellence in the EU - at the cost of the HSE - and have surgery there. I got my request and had both breasts removed. I chose not to have reconstructive surgery too. I made the correct choice for me. As it happens had I not had my right breast removed I was told it would have been removed very soon after as there were signs that the triple neg cancer cells were spreading quickly. I have absolutely no regrets, my boobs were killing me. It is all down to personal choice. I also think surgical oncologists should take more notice of patient views and not try foisting their views and opinions onto patients if a patient is strong willed and determined and knows what she/he are talking about. Good luck in your decision and I hope you get the support from your oncology team. Mine were fantastic.

[GinaD19]

Hi Anita, I had a full mastectomy of my right breast and full lymph node removal on my right side 5 1/2 years ago. I was large breasted so would have had to have a breast reduction on my left side following reconstruction on my right side. I wanted symmetry so opted instead for a left breast mastectomy and implants to both breasts. I had to have a psyc evaluation as the left breast removal was elective but I have never regretted having the second operation and finding out it was cancer free was a huge bonus. My operations were performed in Manchester. I wish you well xx

[blue_sky1]

I did this so you are in good company. It definitely gives peace of mind although I believe my surgeon's advice was correct, which was: if it's going to recur, the only recurrence you should worry about is stage 4. A local recurrence is easily dealt with. However who wants a local recurrence? Not me! So I went ahead. Would I do it again? Maybe......I'm a few ops down the line and my advice would be to go for the same type of reconstruction on both sides, otherwise you are left with a different look and feel. Best of luck xxx