Leiomyosarcoma finally diagnosed!!!

Good luck for tomorrow Jane. Let us know how you get on x 

Thank you. I hope you are doing ok xxx

Yes thank you, although I’m awaiting a CT scan for next oncology check up. Always a worrying time. 

My results from fibroid not all back yet, other than knowing it’s a sarcoma. I need another CT scan too before can decide on treatment 

more waiting, so I feel your pain. 
hope you’re ok xxx

Oh no! That’s a 2nd time you’ve been to an appointment to be told that isn’t it. How frustrating for you. Don’t know why they wouldn’t of done a CT before the oncology appointment in Southampton. I hope the CT is soon and you can start getting some answers. X 

I know. I agree, why couldn’t they have done another scan first?

So frustrating 

thank you

xxx

My surgeon told me after the op that it wasn't cancer so I was relieved until 10 days later the specialist gynae nurse rang me to say it was leiomyosarcoma. I then had to wait until this week to see the sarcoma consultant at the Christie. It was a nightmare waiting. I will be scanned etc every 3 months now. I hope you get answers soon. Deb x

Hi 

That’s awful, to find out later. At least it hadn’t spread, mine has. I saw the scan last week, just a small tumour at the bottom of my right lung. So scared, as know I need treatment, and no idea if anything will work. 
Should get CT scan next week to see if it’s grown 

take care xxx

Hi Jane

Good to hear you will get the CT scan next week. I hope they will be able to tell you what's possible very soon. All situations are different but I have been very lucky so far as I was able to have numerous surgeries over the years to remove the LMS lung metastases.  I wish you all the best for next week. Stay optimistic. Keep in touch. xx

I was diagnosed with leiomyosarcoma in June this year. I had an open total hysterectomy on the 13th July. It was removed whole but I do have some lymphovascular space invasion. I saw my sarcoma consultant for the first time on Tuesday at the Christie hospital. He said that chemo and radiotherapy isn't affective against Lms. He also said that if it returns it is usually in the lungs and during the first two years. I will be monitored every 3 months but I'm terrified of it returning. Were you told that adjuvant therapy doesn't work? Is the only treatment surgical removal of Mets? Deb