Hi,
I found out I am a carrier of the BRCA1 gene back in Oct last year. I am 27 and have opted to have a preventative double mastectomy with reconstruction. My mum has had breast cancer twice and my sister was diagnosed with it in July this year at age 29. She has had a double mastectomy and is recovering well. I am seeing the surgeon next Fri to discuss my options and wondered if anyone knew roughly how long it will be before you actually go in for the surgery after seeing the surgeon if you are having the preventative surgery? Also it would be really good to hear anyones thoughts on how they have got on with having this op as I starting to get a bit nervous?
Thanks
hello loopylis27
I can only comment based upon my own experience, as I am sure surgeons will have different approaches.
After my first meeting with my surgeon she sent me away to think about it, and to have a meet with my breast care nurse, and then I went back after about 3 months. It was then left up to me how quickly I had surgery after my second meeting with my surgeon. I actually took over 6 months to think about it!
but once I had decided, then she fitted me in around my own work and personal schedule. I think I could have had it done within about 6 weeks initially - but my own schedule meant I waited about 3 months.
As for your nerves. My operation has been a “process” rather than a one-off operation (as you may have seen from your sister). I feel it took about a year to sort out my body, have “tidy-ups” and to adjust to my new self (I also had my ovaries out in the original operation so I am menopausal too - which has taken the most adjustment).
I had expanding implants under my chest muscles, and later had nipple tattoos, and my implant ports removed, and am very pleased with the results. I no longer fear cancer in a paranoid way, and am getting on with my life.
The waiting for surgery is the worst bit - you are bound to be nervous - but there is no need to be (easy for me to say after the fact, I know - I was petrified!)
Feel free to ask any other questions.
best wishes
Jane
Hi Jane,
Thanks for your reply - your right - the wating is the worst bit! Its just nice to have some kind of idea as both the clinical geneticist and the clinical psychologist I have seen along the way haven’t been able to give me a clue.
I am definately happy to go ahead with operation and then I can stop being paranoid that I am going to get cancer any day now. I am just starting to get a bit worried about the pain. I am hoping that I can have tissue expanders as well which I guess the surgeon will give me the go ahead on or not next week.
I have decided to wait to have my ovaries out until later as I haven’t got any children yet and would like them. Do you mind telling me how old you were when you had your op? Also, are you happy with the finished results now?
Thanks again
Hi again
No problem answering your questions. I was 39 when I had my op.
I was phobic about hospitals, and had to have hypnotherapy to get me there!
As for the pain - I was petrified of the idea of the pain - but I hardly felt any. I accepted the pain relief they offered (a bit of morphine straight after the op, and then I went onto regular paracetamol and dihydrocodine, and then just paracetamol). I wasnt “woozy” or disorientated on painkillers, but they obviously kept it away. The nurses were fab and clearly dont expect you to be in any pain, so I wouldnt worry at all if I had to go through that again.
The main thing I remember feeling at the time was the effect of the expanders under my chest muscles. It wasnt in any way painful - but came as a surprise - it was as if I had a sandbag on my chest - heavy and a bit constrictive. This eases each day as your muscles stretch (and re-occurs as your implants are slowly filled over the next few weeks). But on the first morning after the op I didnt dare breathe too deeply because it felt so strange. But the physio came round and showed me some exercises to do and I was soon mobile and getting used to the new me.
As for the results. Yes I am very happy. I can see slight differences in each breast as they were man-made by two diff surgeons at the same time, but I doubt anyone else can tell - I have pert B/C cup breasts, and have reduced my chances of having cancer.
best wishes
Jane