My Experience

Hi, Sorry I haven't posted anything as I had lost my a/c name and password, but had been on to the facebook support groups since.  Cut a long story short, my malignant PT was removed and then again a wider incision made within weeks, even though my mum & I asked about mastectomy.  Mum did quite a lot of research on clinical trials by Dr Barth and we raised the issue of radiation on the site with our surgeon to minimise the chance of reoccurrance...  she was flippant and said it didn't work  and said that the tumour is not the type to mestasise, but would send us to anywhere we wanted for testing as well as the Professor Radiation who will confirm that radiation is not an option..... quote ït's your money"!  We did go to see the Professor who had the latest research and confirmed that radiation / mastectomy would reduce the chance of reoccurance to 5%.  We chose mastectomy and so booked in for surgery withing the 3 weeks with our surgeon's agreement.  Mum did more research into why people were having double mastectomies even on P/T that were benign in one.  It made sense .......psycologically, not to have the fear of the other breast......cosmetically to have both identical at the same time and to not go through the trauma later of reducing the other breast to match (I was 10DD).  When we told my surgeon, she went balistic..... asking why would I want to remove a healthy breast & made mum feel like she was wanting to disfigure me!! I convinced her that that was what I wanted and that it was önly a breast"not a leg or arm.  So on 15th March I had a double mastectomy with tissue expanders inserted and have been getting top ups slowly ever since, until my skin is stretched enough to have implants.  From the moment I had the operation I knew it was the right decision and actually feel happy that we did not take the slowly, slowly approach.  I feel now that the trauma, fear and dark tunnel I went through had not happened and apart from getting the implants put it, I have a gut feeling that that is the end of P/T for me! 

What was traumatic for my mum was that she found all these options through the facebook support groups and at no time did a breast care nurse no anyone from the McGrath Foundation ever contact us.  Mum even took care of the drains at home after the op.

Well it is scary how little the medical profession know and I guess that they don't have the time to do the research that family have. My surgeon said she was criticised by her peers for doing a bilateral (probably men) .I am so thankful that I trusted my mum's gut feeling through the terrifying process!  A few weeks later Angelina Jolie announced her decision and I felt so happy.  Best wishes to all you out there and your decisions with what is right for you!!!!!