Leiomyosarcoma, just diagnosed.

Thought i would say hello to you as you seem to be going through a similar situation as i did just last year. I had a huge fibroid removed in 2007 and then exactly 2 years later i developed a mass in my pelvis which turned out to be a leiomyosarcoma. I was treated with just over 7 weeks radiotherapy in Sept/Nov following surgery the previous June. My end of treatment scan shows the treatment appears to have done its job, thank goodness. I was referred to a Specialist in London and now have to have regular 3 monthly scans/check-ups.

So, are they going to offer you some radiotherapy or further surgery? I have heard that chemo is not so effective with some sarcomas but these are very rare cancers and results can be surprising. I guess whatever treatment you are offered, you need to take it. Let me know how you get on. I hope you are not in too much discomfort, keep your chin up and keep calm! Luv Gillian x

Thank you for sharing your experiences. Because I have several spots on lungs and mass in pelvis which they are not sure if its post op fluid or whatever they are going for chemotherapy. I'm starting on 12th April with 3 sessions of doxorubcin. Then they will scan. If results look good I will have another 3 sessions, if not the oncologist said he would change the drug or I could go on a clinical trial using two drugs at same time. Here's hoping the chemo works.  

Hi thanks for all the links. I read your profile and you are doing really well. It gives me some home in this pretty upsetting day. Just got my scan results today and have just told my 16yr old son the news. Will talk to my younger boys tomorrow. I look at links tomorrow as it's late now and I feel shattered. Keep in touch.

Geraldine xx

I had a smliar experience to you aswell. I had heavy bleeding for nearly a year nonstop. Cos of my age (im 19) they said it was most likely hormonal etc and tried me on lots of different pills and what not. Nothing worked and i was experiencing extreme pain. Finally, in june las year, they decied to go a D&C and hope to fit the coil. I was then found to have a large tumour on my cervix and spread up into my womb and round my pelvis etc. It was Ewings Sarcoma, which i know is different from different from other sarcomas, but im currently recieving chemo and  radio and ive responded well. I got dox aswell and a lady i was in a ward with described it as a "good strong drug".

Just stay positive and believe that you beat this.

Take care x

I can appreciate your being scared and frightened about what is happening to you.  You and your husband will be able to tell th boys what is happening to you and how you feel.  I remember tellng my girls, who are older than your boys, and how hard that was.  But it was better for them to know then wonder what was wrong with me (and my mood swings!).  We kept it out in the open.  I even set up a round robin email for my friends.  Each time I came back from chemotherapy I wrote and update which included what the doctor had said about how I was getting on.  

Stay positive - you will beat this thing - with a loving husband to help you through the bad times (if yo have any) and loving boys to care for you will come through this.

Helena