On Friday i went off to London for my 'end of treatment' scan results. My daughter who was visiting from Suffolk came along too. We went on the train and got to the Hospital about 15mins before my appointment time. Felt ok but a little apprehensive wondering what i might be told. I was called in after about 25mins. My Specialist spoke about my kidneys to start with as on Monday i had a small op to replace the two ureteric stents i have in place due to my renal failure last year. It appears that my kidneys are still swollen but in time may get better. She then went on to tell me that she is pleased with the scan results as the treatment seems to have worked even though there is still 'something' showing on the scan, which she says is probably scar tissue. I was pleased to hear this but was concerned about the something still there bit! I asked a few questions and then something made me query my surgery back in 2007 where i had a huge benign fibroid removed which was in my uterus. On my hospital notes i saw that this fibroid was listed as a benign leiomyosarcoma and i didnt know that these tumours could be anything other than malignant. Well my Specialist then looked through her notes she had in front of her and then she looked at me and started apologising that no one had told me yet that they had in fact got my uterus out again and examined it whilst i was having my radiotherapy last Sept/Nov and discovered that it was afterall a malignant cancer. My goodness i was in shock! That meant that i have had cancer since 2007 and didnt even know. Wow. It was also a rare leiomyosarcoma like the one i had removed from my pelvis last June. She went on to say that my treatment would not have been any different as i had a total hysterectomy therefore no other treatment was necessary. The good news was that at the present time all was well with me apart from my swollen kidneys. I was the asked to come back in 3months time for a chest x-ray and in 6months time for a full body scan again. Both my surgeries were done at a different hospital to the one in London which i have to go to as it specialises in my type of rare cancer.
My daughter and i left the Hospital for the train home. Having thought more about what we were told, i was angry because i was thinking that i could have had lots of regular scans/checkups after the first surgery and i may not have had to go through last years hell. Surely i have a case for misdiagnosis? Gosh, dare i open a can of worms?
Luv to all, Gillian x
