Hi there! I’ve recently been diagnosed with leiomyosarcoma. I was initially admitted to hospital with suspected appendicitis but they quickly found a large mass in my abdomen that we named “Dave” (who knows why). They weren’t sure if Dave was a fibroid that was disintegrating from the inside at first. They were reluctant to operate as my infection level was 330 (quite high apparently when it should have between 5 & 10).
Eventually, after 2 weeks of intravenous antibiotics and a tiny reduction in my infection level, my amazing persuaded the MDT that to leave me in pain any longer was cruel and that Dave needed to be removed. Dave was pretty big by then so it took a while to recover from the operation. Dave was sent off to be examined!
I found out 1 month after surgery that Dave was a Sarcoma but they are still unsure where he came from. Although the little devil wrapped himself around my bladder so I’m currently wearing a catheter while that heals. Dave was sent to the Sarcoma Team at Morriston Hospital in Swansea to be examined in more detail.
The report went to the MDT last Weds and I got a call that afternoon to tell me that Dave has sent two little devils to my lungs. In fairness, by Friday I was in Velindre seeing another consultant and talking through my options. So we are kicking off things with a PET scan asap to see if Dave has sent any more gifts elsewhere.
All jokes aside, I’m pretty scared. My consultant seemed to think that surgery on the two small tumours in my lungs was the only chance of stopping this spreading. Otherwise, he said chemo would only buy me a bit of extra time. I’m trying to stay positive and think that Plan A surgery will be the path. But also has a few tears of sadness and sheer anger that I may not have much time with my kids and husband left.
Well, that’s my tale of woe! Hoping to find some support and inspiration from you amazing bunch!
Hi Mumma C
Your adventures do not sound too different to Janice in that she had a massive infection before they found the LMS. In her case she has quite a lot of mets in her lung so surgery was never really an option.
She never wanted a prognosis and the only treatment on the table was chemotherapy but for her it seems to have worked. She had two different types of chemotherapy and that rendered her cancer stable and we have been in the state of living with cancer now for about 10 years.
There is some really good information available on the sarcoma uk site
I ended up doing a living with less stress course that really helped me - I spent so much time thinking how would I cope when I had lost Janice and it robbed me of enjoying our time together. Sharing on here and with others really helped me.
<<hugs>>
Steve
