ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

@Esme, Pinkjeni & Happyshopper - I’d love to know how you managed to get them to agree to a prophylactic mastectomy if you feel comfortable sharing? The impression I’ve been given is that I’m going to have to fight pretty hard for it in my area (Essex). Any advice would be great!

I originally had single mx with no recon 5 yrs ago after chemo. After a few years of living with the lop-sidedness and bone secondaries, I asked my surgeon if he would consider a second mx. As I was reasonably stable at the time and the surgeon is lovely, he agreed on the grounds of balancing me up and for prophylatic purposes. The results are fab and gave me no pain at all. I retired early due to the secondaries so can’t help re the recovery time but was allowed to drive again after 4 weeks, by which time I was climbing the walls having to sort other arrangements for getting around - how materialistic is that??!

Whatever any of you decide, I hope it goes well and you get what you want (my surgeon said the psychological element is so very important). I don’t regret it for one minute x

Hi Lyssy,
I didn’t have any problems at all getting my surgeon to agree. When I spoke to her I was very clear that it was what I wanted a)because they told me it would reduce my chances of getting cancer in my left breast by up to 95%! Also, I worry every time I go for a mammogram, and spend a lot of unecessary time wondering if something awful is growing in my breast that I am not aware of. b) I feel lopsided and, in my opinion, look daft!
I think that because I was very determined and had clearly looked into the pro’s and con’s my surgeon realized that it wasn’t a rash decision and was happy to go ahead. I think they just want to know that you are very clear that this is the right decision for you.
Maybe you could talk things through with your Breast Care Nurse? They are usually very supportive.
Good luck!
Lizcat,
Thank you for your reply re recovery. Driving again after 4 weeks sounds pretty good! I know it sounds daft, but I’ve got 3 weeks to go before I have my op and I can’t wait! I just want it over done with and can hopefully feel less worried about what is happening in my body!
Esme x

I’m interested to read this thread … I had a left Mastectomy in December, and at the time I was adamant that I didn’t want expander and implants. My body (and my mind) does just not get on with having some forreign body inside. It tried to reject my drains, and it’s looking sideway at my portacath as we speak, besides which I think they look horrid, and I’d be worried about failure … no, so no regrets.

Now I have seen my radiation oncologist and she said that radiation thickens the skin and can cause problems if I was to be thinking about implants … told her I wasn’t, and I know all about Diep and Tram reconstruction, having worked on a plastic surgery unit.

So I am not quite there yet, but I do find I hate being lop-sided. So far I’ve only got a softie, which floats around hopelessly, and soon I will see about a propsthesis, but I am considering reconstruction … I would think that I will at least have to have reduction on my right breast, and from the point of view of not worrying about another primary, I am considering prophylactic right mastectomy, with or without reconstruction bilaterally.

I work with a lady who told me she had bilat Mx years ago. Goes flat-chested and is very happy and healthy. I had never realised!

Hmmm … I don’t have to decide anything yet, don’t finish chemo til mid-June, and that’s when I see my breast surgeon again … Food for thought though! Thanks :slight_smile:

Hi there

I had a double mx in 2009 at the age of 46. One side was with axillary clearance and the other side was prophylactic.
I did have a very large bust so the surgeon actually told me on the day that he thought it was a good decision because the lop-sidedness would have been difficult to manage.
I have never considered a reconstruction. If I could have had an immediate one I might possibly have although I’m not sure even then. I can’t face the thought of such big surgery and feel like I’ve been through enough. I want to focus on moving forward, getting fitter and getting on with my life which was put on hold through all the treatment.
I use prostheses every day and have special ones for going swimming. I think I’ve actually taken more care with my appearance since my treatment. I feel very feminine even though I don’t have breasts. People actually tell me that they’ve never seen me looking so good! The prostheses give me a good shape and look natural. Most days I don’t even think about it. I consider myself lucky to be alive and well and losing my breasts was the price to pay for my life. I am grateful and happy to be alive and think about what I want to achieve or enjoy in life rather than what I don’t have.
Companies like Amoena are starting to do much prettier mx bras and a bigger range too. Also companies like Nicola Jane are good. If you get the Vita magazine from BCC they have a list of outlets. The only thing I avoid is any tops that are too low cut but even when I had a big bust I did the same.
Elinda xx

I had a bilateral Mx just over two weeks ago. The dressings were removed yesterday. It is still a bit sore around the scars but the surgeon and BCN were quite happy with the result. They told me that I could now shower and bathe as normal, and also use moisturiser so I started today with bio oil.

i had a RMx and a temporary expander fitted last November, but then discovered cancer in my left breast. I immediately wanted L Mx and didn’t get on too well with the expander so asked for bilateral then. Since they also found that I had bone mets and a lesion under my right breast which turned out to be cancerous they were reluctant to do it.
i was put on LETROZOLE which has shown a “huge drop” in the tumour markers in my blood so after a meeting with Onc, surgeon, BCN and psychologist they decided that they would do it. I am so glad they did. When I am fully recovered and have my prostheses I will buy some new clothes and get on with it. Like Elinda I am taking more care with my appearance and treating myself to new make up etc.

Just didn’t want a foreign part and was never very comfy even with the temporary one. Will have to continue treatment because of the mets, but feel better now.