Hi 

I am trying to remain positve but having official been given my diagnosis four weeks after a hysterectomy - it would be good to connect with anyone who has any experience of Leiomyosarcoma.  I have not yet had discussions about a treatment plan but chemo is likely.  

I began reading medical research for a better understanding of what the consultant said is a rare cancer, the prognosis is poor. This is being exasperated by the lack action by medics.  Is it normal to wait so long for follow-up after diagnosis?  I also want to take the prognosis with 'a pitch of salt' - but is that just being naive, and part of the initial reaction to the diagnosis? 

I have a teenage daughter for whom I am worried - I am waiting until I know what the plan is before telling her.  I know this will shatter her world - I know she will demonstrate resilience but it hurts knowing her childhood already sad, will become saddener.

I know it's about taking one day at a time - and managing my expectations not sure how I will do it though? 

I am trying not to worry - but clearly I am... Does anyone have any experience of this cancer and it's management?

Thank you.