Myxoid Liposarcoma

Hi Tillyandgeordie and welcome to the community, but sorry you find yourself here. 

My cancer is different to yours, I have endometrial stromal sarcoma, so I had a hysterectomy back in 2009, but since 2014 I have tumours in my lungs. I had radiotherapy on my lung, and had a very good result from that.  

I hope you do not have too long to wait before treatment starts. The waiting is the worst. Once it starts and you know what to expect, it seems to get easier. 

Let us know how you get on.

Take care 

Thank you Chelle. It’s lovely of you to take the time to respond to my post. I’m a total newbie to forums so thanks for welcoming me. 
My radiotherapy should start next week all being well so it’s reassuring to hear that you responded well to it. You are right the waiting is the worst! I just want to get on with it now. 
I love that Maya Angelou quote  

Take care 

Emma 

Hi

Can I add my welcome to the one from chellesimo.

My experience with cancer is via my wife who has Leiomyosarcoma so on one hand I am different because I am carer rather than patient but on the other hand more familiar with sarcoma. Always fun when my wife has to see a new GP and we watch them end up looking up the cancer on wikipedia - on the one hand having a rarer cancer has some disadvantages but on the other hand there are plus points too.

Have to agree any part of waiting is hard - though sometimes when they seem in a hurry that can feel even worse - and sometimes it is just a cancellation. 

There is a really useful set of resources available from sarcoma uk including their link to the sarcoma specialist centres - we are really lucky that we life quite close to Oxford so not too long a journey for us.

The other really good news for us was that the second round of chemotherapy managed to stop my wife's cancer spreading - 6 years now of living with cancer - the new gold standard in our life.

<<hugs>>

Steve

Thanks Steve for your message too.
I’m fortunately not too far from our nearest Sarcoma specialist centre at Nottingham. In fact, I’m soon learning that finding a car park space can take longer than the drive there!
I am slowly processing both the situation and the resources available and so will definitely look up Sarcoma UK.
Many thanks  

Hi - car parking - biggest nightmare of going to the blinking hospital. Still start the appointment off with an overdose of stress and things work really well from then on.

I am aware of one workplace where the trade union actually won a case of indirect sexual discrimination against their employer for under provision of car parking - that rational being that it was often parents doing the school run who could not find parking spaces, the majority of the parents doing the school run were female and therefore there was a prima facie case of a policy that disproportionately affected one gender rather than another. Sometimes all it takes to win is to think a little bit differently.

We are extra lucky in Oxford since I have an arthritic condition in my spine and one of the world's leading centres for that is actually just over the road from the cancer centre. Add in to the mix the lovely team in our local Maggies - I saw their lead cancer specialist is up for an award from out local paper and had been described as 'wonder woman'.

Processing everything does take time - we have had six years of it and as they say practice makes perfect. Sometimes it makes me wonder why they call it practicing medicine. It does not take all that long however for us to catch up with the 'experts' on our specific challenges.

<<hugs>>

Steve

Hi Tillyandgeorgie

sorry that you find yourself here and I hope all goes well with your radiotherapy.

I hope you don't mind but how long did you have to wait for your biopsy results?

the reason I ask is because I have a lump in my deltoid muscle which the radiologist and consultant suspect to be myxoid.

I had a biopsy taken on Wednesday 31st March and I am still waiting on the results, I phone every other day and to be told they are not back yet. 
yesterday I was told some are back but hey are waiting on the fish report (!not sure what that is) 

stay strong 

Tracie 

Hi Tracie, excuse me for interrupting your post. Fish testing looks for gene changes in cells. 
Good luck with your results. I hope you don’t have much longer to wait x 

Hi Tracie 

Sorry to hear about your anxious wait. It is the waiting and not knowing, in my own experience, that is difficult. 
I was told at my biopsy that it was the same laboratory that was handling Covid testing and that it could possibly be a longer wait than usual. 
However, it was about 10 days between the biopsy and the oncologist appointment where I was informed of the results. 
keeping everything crossed for you 

take care 

Thank you 

Yes totally agree about the waiting 

thank you