Myxofibrosarcoma: What treatments did you have?

Hi there @liv38556 I am thankful things are working out from your VERY scary and challenging journey with this rare sarcoma. When I heard that my husband had the same as you (Rare) i first thought, "oh...Rare? Oh, that's a good thing right?" But quickly i realized ..... it's not the best news. When you mentioned C-section...and all the muscles pushed around and some cut, ....it totally lowered my anxiety level for the day. Because I too had two C-sections and I too remember how the first few weeks were NOT FUN, but given time, the body healed itself.....so that's something to think about when my hubby comes home with all the stitches and bandaging....and needing constant wound care. And hey, Duck tape comes in handy everywhere!
Researchers don't seem to have answers on a cause for rare myxofibrosarcoma...but i feel you're situation makes sense. Dog bite yrs and yrs ago. My husband was tubing on the lake 12 yrs ago....with another tube rider beside him, and in high speed they bumped extremely hard into each other's tube , with my husband's leg being pulled sooo much out horizontally, that it ripped muscles in his groin/upper thigh. Was limping and black and blue for weeks. This is where the sarcoma growth is ! My husband also (3yrs ago) had double knee replacement and was using a walker inside of three days time. He's fit and trained on reclining bike well before and after surgery. You having a wound vac - well it's new to me. I'm assuming though you can catch anything happening a lot sooner with the wound being somewhat open/exposed. I'm feeling our surgeon will use the conventional suture procedure. But again, from you.... I now know to ask about it. Thank you!! I appreciate your post so much!

I had a soft tissue sarcoma removed from my left thigh in 2021. It grew into a very large growth rather quickly once it broke the skin and seemed to stem from a dog bite (our own dog) I had over 10 years ago. I was on a wound vac to close it up (no stitches or staples or graft). It left a fairly large hole in my leg but it healed up (closed) in good time and I haven’t had really very much afteraffects from it muscle wise ever since. I started Physical Therapy on it like 8 months later just to help me feel more confident about using that leg normally. I might do more. It has a huge scar from the surgery and it still feels odd at times to do with many of the nerves in that area but otherwise it’s been feeling very much like it used to before all this happened to me. (Having had a CSection in 1991 with the birth of our 2nd child did help me to get thru this easier I think.) Similarly they had to cut thru many layers of tissue and I got back on my feet pretty quickly after that too. I was up walking on my leg though this latest time pretty quickly although they had me in a full leg brace for awhile but I got around with a walker and sometimes a wheelchair and then a cane for a bit. A nurse came to my house and would change the wound vac bandage every other day while I had to use the wound vac. When the nurse first changed the wound vac bandage I remember I cried and said Call 911! as I looked at the open gaping hole in my thigh. It was beyond my comprehension why the bandage had to be replaced every other day which was painful to have done but I went along with it and soon the gaping hole in my thigh did heal up completely basically all on its own. At one point the surgeon wanted the wound vac removed completely and so the visiting nurse just used rolled gauze to cover it. I went thru a lot of gauze that year I remember. I was in the hospital for this for just a few days. I was told I could do away with the clot prevention bags on my legs and go home as soon as I could get up on my own and use the bathroom so I accomplished that ASAP I remember. The worst part of it all as I recall was needing to cover the bandage in plastic so I could take a shower. I was terrified of getting shower water and soap in the surgical incision, My cousin a former home health aid suggested I use plastic wrap and duck tape.

So sorry to hear about your myxofibrosarcoma diagnosis My myxofibrosarcoma was in my right lower calf. Started out size of a marble and grew to size of a plum. Took 1 1/2 years to diagnose.they didn't think it was anything serious. MRI could not diagnose anything. When in for a different surgery there they found the mass in Sept 2020. Sent to pathologist in Sacramento but they couldn't diagnose it had to be sent to pathologist in Boston. Diagnosed high grade myxofibrosarcoma. Second surgery at UCSF Dec 2020 after margins came back clean during surgery had brachytherapy which is radiation directly in open wound then had plastic surgeon do a skin graft to cover the large hole. Then 5 nights hospital. Had full lower leg boot on had to wear 24 hrs a day for one month and change bandages daily. Said had to go to rehab for month and i said no I'm going home. Had to prove I could hop to bathroom on my own with walker. Thank goodness I work out. Then went home had to be bed bound for 1 month because too many muscles in the calf and the skin graft would never have healed. After month slowly started walking with walker then cane for months. Had to do additional radiation another 6 1/2 weeks. Started 2 months after 2nd surgery. The worse thing for a skin graft is radiaion. The skin graft looked liked raw meat but has to complete the 6 1/2 weeks. Very painful.
Then had to back to plastic surgeon to try to save skin graft. Took months.Then started physical therapy. Some days still need a walking stick. But I walk every day 2 1/2 miles.
Pain every day, nights are the worst. But I have my leg I didn't know if I was coming out of surgery with my leg.
If it comes back in my calf I have a 25% chance of saving my calf. So far I have had good news every 6mo.when I do my MRI and my cts every 3 month have all been good news .
Very grateful and thankful.
Prays and good wishes for all of you.

I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you

I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you

Welcome to the shittiest of clubs! I remember that anxiety, stress, and anger so very well. While I don't know anything about your specific situation, I can share what I went through so far. While it's certainly been a challenge, with many hurdles, for me personally the actual experience wasn't nearly as bad as I imagined. I got diagnosed with a high grade sarcoma in my thigh, Thanksgiving 2022. Surgery February 2024, followed by radiation, physical therapy, etc. My last scans have all been clean, and overall I'm doing pretty well. Even went kayaking over Memorial day weekend. I'm only sharing this so you know that it's not all doom and gloom. Ignore the statistics, because you are not one.

The best advice I have is to process the information as it comes, not as you imagine it. In other words, deal with today's problems, and not the future unknowns. What you imagine may be worse than the reality, or may not even happen at all. You already have plenty of real world worries, no point in adding new ones. Don't get too high on good news, and don't get too low on setbacks. Deal with each day as it comes. Feel free to message me if you have questions. While every treatment plan is different, there are commonalities.

Thank you so much Michelle and Chuck. I can’t tell you how much your words mean. Good to hear you both are doing well! I’m going be treating at Froedtert & the Medical College of WI. They are supposedly a top ranked center but one of my fears is being such a rare “c” they may not be as experienced as I need. Can you give me some tips/questions to ask at my appointment next week? Can I ask where you all have been treating? Thank you again, you have restored some of my faith and emotional well being, it’s really so appreciated!