Brca1

Hi Lee I can relate. I was first diagnosed at SCGH in Subiaco after my first mammogram. I am 40 have had  my children and due to my family history decided from the get go I wanted a bilateral mastectomy with immediate reconstruction. I only had DCIS so if I chose this option I wouldn't need radio and providing the nodes were clear not chemo either. To cut a long story short the surgeon that was due to do the lumpectomy lied to me and played down my diagnosis even after I had been told what it was. Basically she made me feel like I was in it for a free boob job or that I wouldn't be able to cope losing my boobs so wouldn't agree to my chosen treatment. I was even told I would need to see a counsellor before that to ensure I realised the enormity of what I was asking for as though I had no idea what I was talking about (crazy me thought it was my body). I stressed numerous times that I wasn't that fond of my boobs anyway and already lived with a constant fear of cancer. I didn't even care at that point if I couldn't have reconstruction, I just wanted my boobs gone so I could sleep at night. When I investigated her hyperplasia diagnosis further with another Dr at SCGH I was told I had infact been told the wrong thing by her, the original diagnosis was correct and that the incident had been reported to the Medical Director. I then lost all faith in the public system and went private. I am now seeing Dr Richard Martin who is based at the Breast Centre at The Mount. I can't speak highly enough of him, he recommended a mastectomy of the DCIS boob and let me make the choices about the other. He even said I can't make that decision for you it is your body. He also referred me for genetic testing as my grandmother died from BC forty years ago and my mum's sister has had two bouts one in each side. Unfortunately I have been told by the genetics team that I don't qualify for free testing. But they also said although they don't think it is BRCA 1 or 2 they do think it is genetic. They are unable to test for other genes at present but we are still considered high risk so my three sisters now qualify for free annual MRI's. I was so angry at that surgeon, I still can't believe she thought she knew my needs better than me. To be honest I don't know how she sleeps at night. I often wonder if she knows or even cares of my outcome. I have two small children I want to see grow at the end of the day who cares about boobs??? Interestingly the GP at SCGH breast screen centre as lovely as she was told me when I went in for the first core biopsy that I was there way too early and if the results of the test came back clear she didn't want to see me until I was at least 45. Pfft wonder if I would have made 45 if I had of listened to them all. As if I was there because I had nothing better to do with my time, they called me I didn't call them. I am a huge believer of everything happens for a reason so I do think I am lucky to have now gone private. I received my treatment so much earlier than if I had stayed public and it has also taught me to have faith and trust in my gutt. Not sure if this is helpful other than to point out it is your body so you should be making the decisions. Trust your gutt and have faith in yourself. Stay well my fellow Perth Pink Sister :0) Lara xx