myxoid liposarcoma

Evening from the UK. I am early into Diognosis of extra skeletal myxoid chondrosarcoma, had an mri today to check for spread since July when I was first scanned and am due a ct soon then surgery and recovery. I wish you all the luck and best wishes in your journey. I am finding that sarcoma is just as rare as they say, as finding similar cases are few and far between. Happy to chat here in Wales x 

Hello. I also have myxoid Liposarcoma and have just completed 25 rounds of radiotherapy too. If you don’t mind sharing, can you share your surgery experience with me please? I’m not too worried about it but more curious about the process, I.e how long did your surgery take, what did your surgery recovery look like? Hope you don’t mind the questions. Thanks! 

Good on you for getting through the radiation. My understanding is this type of cancer typically responds very well to radiation. My tumour was in my left glute and so the surgery included a full glute max resection. The surgery was several hours, though I hadn’t noticed because of course you’re asleep. Directly after surgery was tough because I had lost a fair bit of blood and they were trying methods to prevent a blood transfusion which eventually they opted for. When I first saw my leg post surgery it was shocking, tbh, I wasn’t sure what to expect and so I was surprised. 

I had a post op infection that turned relatively serious that made things more complicated. I would encourage you to speak to your surgeon about bringing in the wound care team while in hospital and if there are local supports. They are truly the experts in wound healing and can keep a great eye on your incision etc. If the incision is where you had radiation that skin strength can be compromised. 

I did have to rebuild a lot of strength, and still am, with the missing glute. It’s been manageable though and I have good supports. I walk normally and what not and have done for some time without aid. 

sending you positive vibes and happy to answer any more questions you may have! 

Sending you positive vibes too. It’s a scary journey but one we can walk no doubt.

Wow it sounds like you’ve had quite the journey! 
I expect my surgery to be in the next few weeks. My tumour has shrunk so much from the radiotherapy so that is one good point! My tumour is on my buttock however it directly next to my hip bone and my bones are still really achy! Can I ask how long you was in hospital for? Thank you so much for such a detailed reply it’s really helpful! Glad you’re on the mend. 

It’s been a journey, that’s for sure. 

im glad to hear the radiotherapy has been effective. We did my surgery about 6 weeks post RT, and so my skin didn’t have a ton of time to heal. I was in hospital for 5 days. I was told it would be 3-5, so this tracked. I had a piece of tumour dangle toward my hip but honestly never had pain really other than sitting on the larger mass. Never would have anticipated it to be this.

I have myxoid liposarcoma but a recent diagnosis August 2024. Wishing you all the best and hope you get the answers you need. 

I’m sorry, what is happening to you really sucks, and it is hard. If you’re open to it, would you share more about your diagnosis, location, treatment plan?

Hi - how are you getting on?

I'm sorry for not seeing this message, I'm not finding it very easy to navigate this website I'm normally pretty computer savvy. So I have had 25 days of Radio therapy, which I was told at the start may not be very effective on my type of cancer..... Its not! I had a CT and MRI two weeks after which shows no change. (also means no growth either, so let's see the positive side). CT was clear so no spread to the lungs which again Good thing. I have just had my pre Surgery assessment yesterday where I have been given a surgery date for 2 weeks time Feb 10th.I am naturally nervous mainly because of the after pain and lack of movement I'll be able to do plus the stay in hospital. I have to have the tumour removed, one of the muscles in my calf taken and put in place of the muscle taken from my knee/thigh. They then will possibly need to also do a skin graft to knit it all together again along with pins etc. I will have a brace for 8weeks to keep the leg completely straight, then all being well one with hinges once I'm healed enough. Lots of physio and after care for the next 6to8 months atleast by the sounds of it. Currently trying to adapt the home as best we can to help out once I'm home as we live in a very small rented pokey bungalow. Thankyou so much for getting in touch and I'll be sure to update on here once surgery is done. Just knowing other people have been through similar and come out the other side is a comfort. X