Myxofibrosarcoma

Hello Gardenshed 

I am Brian one of the Community Champions on the online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the soft tissue sarcomas group.

There are a couple of threads you may find helpful and the links to these are here:-

 GP said sarcoma but MRI report says 4 differentials 

 Myxofibrosarcoma diagnosis - GPs slow to recognise? 

I do hope this helps and I wish you well moving forward.

Best wishes - Brian.

Hi, I had it in 2014. Have been all clear since then. How can I help. 

Hi good that you are all clear. I had a very large pelvic  tumour and was told it was very aggressive. I have had Radiotherapy and surgery. Obviously worried about recurrences. How often were you followed up and with what sort of imaging. This is my second primary cancer had breast cancer 9 years ago. Quite anxious about it all and lost my sister in law to pancreatic cancer very quickly last year so feeling quite negative at times.

I saw the doctors every 3 months after finishing treatment. Had a scan for first 2 years 6 monthly if I recall correctly. After 2 years went 6 monthly then annually after 5 years. It was my first cancer ( hopefully last). Not necessarily similar, mine was v large but not least aggressive so 4,1. 
I fully understand why you’re anxious about reoccurrence. If you don’t mind me offering a thought though, how will worrying help you if it does or if it doesn’t come back?. It might stop you living the rest of your life to the full though. Easy point to make, hard to do. there are many ways to try to manage anxiety which might help. 
hope that helps, reach out if I can assist further

Hello. I was diagnosed with myxofibrosarcoma in my right lower arm in June 2024. It took a long time (over two years) to get a diagnosis but I've been very impressed with the support I've hd since then from the Leeds Sarcoma MDT. I have been in a 'wait and see' mode since then with regular MRI scans and appointments to monitor tumour growth and I'm looking at surgery probably sooner rather than later. It's been a worrying time but I feel well supported. Sarcoma UK have lots of good resources and a helpline. I recommend highly having a look. 

 Hope you are doing ok.

So have they done any other treatment or because it's stable just watching and waiting?

My tumour is growing slowly (it's low grade) but now large (>32cm) extending from around my right elbow and down my forearm to my wrist. Since diagnosis the discussion has always been about the balance between the benefits of removing the tumour and the damage that would cause (lots of tissue removal and skin grafting, etc). So far the downsides of surgery outweigh the upsides but as the tumour slowly becomes circumferential then that balance shifts. I suspect we will be looking seriously at surgery some time during next year. So far, chemo and radio therapies are not an option. Most of the time I'm stoical about waiting and watching. I recognise that is an active choice and best advice. I do feel well cared about by the MDT and I have MRI scans and follow up discussions whenever I'm concerned about rate of change as well as regular check-ins anyway. What is going on for you and how are you???