Mum has secondary leiomyosarcoma of the lung

Oh dear JayJay, my referral was also lost between my hospital and the Marsden.  To whom has she been referred at the Marsden?   I've heard of Gemcitabine (with docetaxol) being used for uterine LMS.  How large is her lung nodule?  Sometimes they can be ablated with SBRT which is a targeted x ray therapy.   You'll find loads of information in 3-4 excellent facebook leiomyosarcoma groups.

I'm so sorry for your mum and also for you. It's terrible that she hasn't had the appropriate follow up. I had my hysterectomy last July and have had several scans, MRIs and x-rays. I'm sorry that I can't offer any advice but someone will be along soon that can help you. In the meantime I'd ring Macmillan to talk to someone. My youngest daughter is 32 and worries about me and I worry about how my family will cope if I'm not here.

Professor Jones at Chelsea.  They lost her paperwork between them and her consultant at the QEQM.  Her lung tumour is about 5cm and 3 little ones.  It was tiny when first found in November.   Hoping to find something to reduce it and give her time.  I’m worried that they will just continue to say no treatment.  I can’t accept it.  She had a uterine tumour removed last year.  I will ask consultant for more options.  

Prof Jones has an excellent reputation but nothing makes up for that unacceptable delay.  I hope that you are making a complaint about the loss of the referral, you can mention that mine was lost too if you wish.  When will you hear about whether she will receive chemo?

Hi Jinny may I ask how you are getting on with your lung mets … hope you’re well ?