Hi everyone I can only speak for myself and I know many of you will know my story already, but for those that don’t, I had bilateral breast cancer, both Grade 2 IDC tumours which were 2.5 cm in total on the left and over 5.2cm on the right. I only had micromets in the sentinel node on the right and this is not classed as lymph node involvement. My original hospital told me nothing was visible on the mammogram and follow up ultrasound I’d had 9 months before I found an area of thickening in my breast tissue. I now know I have category C/D (very/extremely) dense breast tissue and the hospital told me I am amomgst the ‘unlicky 10% whose are mammogrpahically occult.’ (Their words exactly) They also told me that the grading of tumours isn’t always the only indicator for growth rate and maybe the tumours had grown in the nine months between screening . They also said maybe the tumours had been there for much longer but were masked on mammogram by the dense tissue. I am waiting to see if the Parliamentary Ombudsman will accept my request to have all imaging reviewed by and independent panel but even they may not be able to tell me how long the tumours took to grow. I was told that even though the surgeon removed the tumour completely on the left during my breast preserving surgery, it might be better to have the left breast removed as they didn’t know how they would screen me in the future. I had to have the right one removed because more cancer cells were discovered below he nipple despite a re-excision. Ultimately, I felt happier having both breasts removed. I had my op at a different hospital and when the pathology results came back it showed I’d still had cancer cells in both breasts despite my previous surgeries and six months of chemo so I’m very relieved I opted for a double mastectomy. As I no longer have any breast tissue the view is there is no need to scan either by mammogram, ultrasound or MRI but I am planning on continuing with yearly private ultrasounds (I have a five percent chance of breast cancer returning in the skin as I had skin sparing mastectomies) for peace of mind. If I’d had a lumpectomy I would absolutely insist on yearly ultrasounds at least as part of my follow ups. .
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