MPNST with rhabdomyosarcomatous differentiation

Hi Stanley2019 and welcome to our community.

We wife's encounter with sarcoma is quite different as she has Leiomyosarcoma, but any rare cancer presents a certain degree of challenge. There is a sister site to Macmillan in sarcoma UK and they have some helpful information on MPNST here

We were lucky in that we live really close to one of the sarcoma specialist centres so routinely saw one of the countries top specialists and in my wife's case while her cancer is not curable they have managed to render things stable and so we are living with cancer now - frankly I am amazed at how well my wife is doing and very happy to work with that.

<<hugs>>

Steve

Thank you Steve for your reply and best wishes to you& your wife x

Hi really pleased that it looks like surgery was a success. I must say when I read the name I recognised the types but not together.it might be worth seeing if your medical team are aware of anyone else in the country with the same type or try ringing sarcoma uk as they may be aware too. I expect although types are different there are similar experiences with sarcoma so keep in touch on here. There are some Facebook groups too that have international members that you might connect with others on. I've just started radiotherapy too on the pelvis but no surgery for me. I'm finding radiotherapy ok so far and am taking shark liver oil supplements as I read this helps our bodies clear dead cells and our healthy cells recover...not sure how effective they are but I'll try anything in support of treatment 

All the best for continued good health 

Thank you Annie for getting back to me I will maybe give sarcoma uk a call and try the shark liver (even though it doesn’t sound the best  ) lol. I hope your treatment goes well and you continue to feel well 

Hiya. I had a MPNST. But not sure of the differentiation. Had a 6cm tumour in my neck, had a 9cm tumour 5 years ago however that was the benign version of MPNST (schwanoma). They told me last week it’s really rare. I’m waiting to start radio therapy. Hope your radio therapy went well and you’re doing ok xx

Hi thank you for your reply I am a bit confused with the differentiation part as well think I will need to ask what it means. I am doing well thank you after my radiotherapy apart from slighty bald where I got the treatment, reading between the lines has a tumour retuned for you now you are having radiotherapy after 5 years 

hope all goes well for your treatment as well x 

Yeah ask your surgeon :) glad you’re doing well. Oh really?? I have read about hair loss. Yes I found out in Feb a tumour returned. Had it removed in April and found out 2 weeks ago it was malignant so just waiting for radiotherapy now but they’ve applied for the proton radiotherapy.

thank you x 

Glad you have had it removed I didn’t really have Any side effects with the radiotherapy I don’t know what kind I got though ( I really need  to ask more questions) 

I have like a arch one side bald and slightly on the other side but it is coming back I can feel stubbles so hope that helps you but you shouldn’t lose hair if it’s in your neck anyway as it’s really just in the place where you get it 

hope all goes well with you x