Hello, I am dawn I was diagnosed at 39 after a hysterectomy for a fibroid after an MRI rules out cancer… leiomyosarcoma is the diagnosis stage 1b in may 24 in June, the CT was no evidence of disease by sept it had spread to my lungs after 20 watch and wait it all grew and now have a tumour on my liver, I am 8 weeks of hormone blockers and then re scan of this route fails it a choice to walk away and have months or do chemo and i may live to feb. these are the doctors words chemo is so you can say you tried everything to your loved ones
I have 5 children and I am not ready to leave this earth like everyone I wanted to see my kids grown up get married the youngest is 7.
I feel alone not really sure i have it in me for chemo because I don’t see the point in all the side effects to maybe gain 6 months more of anyone has the same as me please tell me your journey, looking for inspiration because marsden have left me with none.
Hello Dazzledawn64
Welcome to the Soft tissue sarcoma group.
I am very sorry to hear that your leiomyosarcoma has progressed to your liver and lungs. It must have been hard to be told that after your previous surgery appeared successful.
My own cancer was carcinoma sarcoma and I also had a hysterectomy and it was followed up with chemotherapy and radiotherapy.
My chemotherapy was carboplatin and paclitaxel and it was done on a 21 day cycle. So 1 day I was in hospital and then I had 20 at home. To be honest the thought of the chemo was worse than my experience of it. It was challenging at times but was doable. I would have 1 week where I felt rough and then would start to pick up and was able to get out and about and do things. Although I don't have younger children like you do, I feel I would have been ok and been able to do things with them. It was the first week really.
I did have side effects but on the whole they were manageable with medication and rest. My side effects were hair loss (I did use the cooling cap so it was minimal) tummy effects, fatigue mainly.
My feeling at the time was to have the first cycle and see how it affected me. The consultant was clear that it was my choice to stop at any point.
I am going to tag a fellow Community Champion in this as he has more experience with leiomyosarcoma.
I wish you well whatever you decide. In the meantime please do give the Support Line a call if it would help to talk things through.
Jane
Hi dazzledawn84
As Jane noted my wife Janice has Leiomyosarcoma, they believe in her case it started from a fibroid but was missed at that stage since she had other issues too and was only found after it had spread to her lungs and lymph nodes.
They think it likely that her LMS is hormone sensitive so she has been on Letrozole for quite a few years now. For a while her treatment was watch and wait but then the oncologist suggested trying chemotherapy though they did not hold out that much in the way of hope. First they tried Doxyrubicin that managed to knock the cancer back some but caused other problems - they fortunately were fixable but meant the treatment was stopped halfway through. Later they tried Gemcatabine and it appears this put the cancer to sleep - now several years later we live with cancer - been they for many years and still going strong.
<<hugs>>
Steve
