In May my gp sent me to A and E with suspected pancreatitis. I saw a senior nurse practitioner who said it was a kidney stone as there was blood in my urine sample. He gave me codeine and told me to return if things got worse. I returned the next afternoon. They gave me morphine and sent me for a ct scan as they thought it was appendicitis. They saw a mass on my uterus and sent me straight to the gynae ward. I had a biopsy and a few days later an MRI. They then had a MDT with the Christie hospital and told me that I have a cancerous fibroid. Naturally I googled it. Apparently fibroid are always benign except when it's leiomyosarcoma. I am having a total hysterectomy including the ovaries and fallopian tubes in two days. Is my consultant not saying it's leiomyosarcoma so I don't panic or is it really just a cancerous fibroid? Is the reason they had to consult with a specialist cancer hospital because it's so rare? I wish I hadn't Google it now because the prognosis isn't good. Deb
Hi Deborino
My wife had Leiomyosarcoma and it was diagnosed much much later than yours and only after it had spread to her lungs. She had a hysterectomy for a totally different reason even before they found the LMS.
She has had two different types of chemotherapy and the second rendered her cancer stable - we have now being living with cancer for over six years. Especially with a rare cancer google is often not your friend as the statistics are basically random noise and of course quite old.
Sarcoma is rare enough that care is concentrated in a few specialist hospitals - we are lucky in that we live very close to Oxford so it was a very natural choice for us anyway.
One of the wonders is when my wife sees a locum or our of hours doctor and tells them she has Leiomyosarcoma - they almost always reach for the computer to look it up on wikipedia.
One thing my wife was totally clear about - she did not want a prognosis (how long). I struggled with that for some time but now I am so glad because things really are changing quickly in sarcoma care, there is a massive programme to ensure it is picked up earlier and that seems to be having really good results in increasing life expectancy.
<<hugs>>
Steve
Hi Steve, thanks for your reply. I hope your wife continues to stay well. I've still not really taken it in that I have cancer. I only went to A and E because of horrendous stomach and back pain. How 
the hell do I have cancer? It doesn't happen to me, it happens to other people. I just envisige the tumour as a horrible black spikey thing and I want it out. It's my surgery tomorrow so I probably won't get much sleep tonight. Wish me luck . Deb
