Leiomyosarcoma

Hi Annie, Sorry to hear this. I hope the team get you on a treatment plan that keeps things stable, have you asked why they aren't doing the surgery? Definitely worth asking for a reason.

Takkecare, chrissy x

Hi I'm asking today and seeking a second opinion for completeness. I think it's to get things stable first because recovery time from surgery would delay therapy but was told surgery could then only happen if im stable for a few years! I'm going to see how things are with the lungs first or if theres any other therapy than chemo to see if I could still have a surgery first. I think its important they address the primary tumour given its size of a grapefruit! 

To be fair I think they are worried about the surgery as its complex with tumour encasing pelvic veins and now theres a reason to use a second line therapy but surgery from what I've read brings the better outcomes longer term

I'll see what today brings with oncology x

So met with oncology yesterday...they said its not uterine although its against my womb its grown from blood vessels...so Retroperineal leiomyosarcoma. No decision yet as to course of treatment and further discussion Monday with second opinion from the Marsden to inform....been told no mets then mets then unsure if Mets and now sure they are...what a rollercoaster 

Wow you must be exhausted I am having my CT tomorrow morning so hopefully will go to MDT next week. 

Hope all goes well x

I am not surprised you are feeling as you are, you have had an awful time.  I believe the MDT are discussing my case on Monday so hope to be seen at the next clinic and get a treatment plan.  However I have been thinking hard about weather I want adjuvant therapy I had heard that the effects can be rough and it sound like you have had very a rough time.  Then again this disease doesn't leave us with easy decisions does it.  I don't know that I can say a lot to help you but I am here listening if you want to talk.

Hi Nanci how are you doing? Hope you got along okay in your meetings. I'm still waiting for a treatment plan though anticipating chemo after Christmas unless anything changes x

Hi had a rough 24 hrs to be honest. My nurse specialist rang me yesterday with the results on my CT scan and the cancer has spread to my nodes and my right lung.  I saw the consultant this morning and he said I need to see the chest team before they do any surgery.  He did tell me all about the surgery which was help but like you I am now playing a waiting game. Are you planning anything nice for Christmas?

Hi sorry to hear this...you arent alone...I've found it helpful going on social media groups including sarcoma alliance on fb. Its huge and active and seeing stories of hope helps and also allows others to answer questions about treatment etc. 

I also learnt today that surgery is too dangerous for me right now on the primary so I'm having chemo as part of systemic treatment. I'm going to try and focus on Christmas and not think too far ahead. 

I hope you can take some time out over the holidays...especially until you know more about your treatment plan...there is so much they can do now with lots of tools in the box

Xx

Sending you all my very best wishes, I was told that they may decide that surgery is not best for me too.  But they were talking radiotherapy rather than chemo.  I had chemo for a previous breast cancer and it wasn't as bad as expected. It's right years since then so it worked wonders for me.  I am intending to spoil myself silly over the holidays and I hope that you too have a wonderful time. If you want to talk over the weekend please just drop me a line.xx