I had a double MX (left side prophylactic) with immediate DIEP flap reconstruction 5 weeks ago. I paid to speak to a breast surgeon and for a clinical psychologist for myself. I wanted someone independent to take me through my thoughts and ideas to make sure I was doing this for the right reasons. I was diagnosed before Christmas last year and I decided in the middle of January it was definitely what I wanted. The recon wasn't done in my area and they didn't help adivse me. I had to find everything out for myself. They clearly weren't happy. I found the plastic surgeon I wanted to do the recon 2hours away from where I live and she agreed to do the recon. The breast surgeons there took a month to decide they wouldn't do the double mx. Luckily the plastic surgeon agreed with me and my reasoning and she found a breast surgeon who would do the double. Ended up in a private hospital with a NHS slot so that the 2 NHS surgeons could operate together!! The breast surgeons at my hospital and the other made it really difficult for me. They don't like to do it, but it is our right to have what we want (nice guidelines).
All I can tell you is research well and decide what you want for yourself. You are the one who will be living in your body afterwards, no one else. If you want the double though be prepared for a battle. They clearly thought they could scare me into giving up. They picked on the wrong one.
For 2 days after the op I felt like I'd been hit by a bus. The op and the recovery many be longer, but only 5weeks later (in fact before I'd even left the hospital) I know I have made the right choice. I had the time before the op to eat well and exercise to prepare myself for it and I am eating well for healing now. It is paying dividends. We aren't passengers on this nightmare trip. Drive your own decisions, is what I say, as long as they are well informed.
Good luck Ollybobs. Xxx
I think that having a second mastectomy depends a lot on which hospital and the doctors.
I had Rmx in 2012. At the time I was going to have reconstruction so they did a reduction on my other breast so that they would match, this was done at the same time as the Mx. Apparantley all tissue is sent for pathology and when they examined the other breast tissue they discovered cancer in there as well.
After further scans etc I was told I had secondaries in bones and peritoneal area. Also a lesion under my breast was removed and found to have BC cells.
I was put on letrozole. When I asked about having other breast removed surgeon said not. I have lobular cancer and the tumours were really tiny in my remaining breast. He said that - particularly because of the skin lesion- he would worry about cutting through a cancer tumour and causing an eruption in my skin.
I was very disappointed but felt there was no way.
About 6 weeks later my BCN rang me to tell me about tumour markers, she said that there had been an enormous drop in mine since starting Letrozole and they might reconsider the other breast removal.
I mentioned it to the surgeon and he called a meeting which included him, the oncologist, the BCN, a psychologist who sat behind a desk and never spoke and my husband and I.
The surgeon asked the Onc for his views and he was very supportive. He said that he understood the thinking of the surgeon because they are trained to not cut anywhere near cancer cells.
He went on however to say that he could understand how I felt because he had patients who wanted healthy breast removed after a cancer dx.
He said that he thought any eruption could be dealt with by radiotherapy and that since I was to have a general anaesthetic to remove temporary implant in the other breast I wouldn’t be having any additional anaesthetic.
Surgeon then said okay and he gave me a date for about three weeks later. I could tell that he was reluctant but he was fine, never mentioned it again and was very kind at the time of my op.
I agree with Lainey, keep bringing it up, I am pleased that I had mine but probably wouldn’t have taken it further if not for the BC N
I had no problems afterwards and the skin did not erupt.
I had a second mastectomy in 2010 and am very happy with the outcome but I experienced a different response from my (male)surgeon who was reluctant to refer to mdt as didn't want to remove healthy tissue
I requested in may but didn't get my mastectomy until November
I was told I had to fund and find my own psychologist privately which I did and I got the impression that my surgeon had thought that by putting obstacles in my way I would be put off!
So in your position I would telephone the surgeon's secretary or BCN on a regular basis for an update-don't let them think you have gone off the idea
Funding for elective surgery is tighter now than it was in 2010 so the mdt will have to consider this
If you have any other questions I will be happy to respond-for example are you BRCA or other high recurrence risk category as that will affect speed of decision making ?