Myxofibrosarcoma: What treatments did you have?

Here's something I wasn't really prepared for. Scan anxiety. For the most part, I am a get-up and get on with things type of person, and I don't stress or think too much about Sarcoma. But when I am due for scans, as the date gets closer, it's a really nerve-wracking thing. It's odd. There's nothing that's changed that should cause me concern. No lumps, bumps, pains, coughs, etc. Yet, the idea of another scan and results really messes with me.

@chuck138, you're not alone. Scanxiety is a thing. You might appreciate these related discussions:
- Scanxiety: How did you get through scanxiety?
https://connect.mayoclinic.org/discussion/scanxiety/
- How can I defeat my anxiety about medical tests and surgery?
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
Do you have a scan coming up?

Thanks for the great resources. We're all good. Had my CT and MRI on Saturday, both came back clean.

Chuck, I'm so glad to say that your worry was for "nothing." Clean is good. Enjoy the holiday just a bit more, right?

It's a relief to get a result that doesn't have urgent concern. We'll just stay the course.

Speaking of holidays, I know that everyone here is in their own place in their fight with this disease. Some have good news, like I got, and some have bigger challenges and setbacks to deal with. I sincerely wish that this Christmas, you can all find a few moments of joy and happiness with your families and loved ones. Not because of sarcoma but in spite of it.

I read every post here, and even though I don't know any of you personally, I think of you often and am praying for you all.

Merry Christmas!

My husband is in good health....active in sports....73yrs old....active with five grandkids. He noticed a lump on inside of upper left thigh in beginning of November. He got into see his GP by mid November....he was referred to a surgeon who ordered a MRI. The MRI came back as 'incomplete'...so was sent to the Cancer Pavilion to have a needle biopsy done....two weeks ago. This week, he and I met with highly recommended oncologist surgeon who specializes in in lower limb soft tissue surgeries. This surgeon told us that the tissue was examined and shows that the growth in the thigh is 5-6 centimeters, is RARE, is Low Grade Myxofibrosarcoma, located superficially on the muscle. He explained that 25 rounds of radiation is a must and will start in 3 weeks time. Hopefully the sarcoma is greatly shrunk by then . After the radiated tissue is somewhat healed up, he will go in to operate/remove all of this sarcoma that he possibly can, without leaving my husband with a disabled leg. He did say that there is no giving a 100% success. He said he feels 75-85% is pretty accurate for survival rate. I understand all that he said , until the survival rate came in. Can someone respond on this part? I mean if the surgeon removes all of this low grade, slow growing sarcoma, and has radiation, doesn't that pretty much mean surviving percentage is very high? Or.... does the survival rate of five years involve OTHER complications that can arise DUE to the surgery/removal of the sarcoma? On that subject, can anyone tell me how common are complications like blood clots and infections? Does anyone in this support group have experience with surgery/radiation and removal of a sarcoma in their upper leg.....I would like to know how long/ how hard was the getting back of movement in the leg? 5 months? 1 yr? I have read various things on "Dr.Google".....but never did I see mobility returning before 5 months.....from surgery date. Very concerned up here (just north of Seattle) I appreciated your time everyone...who is reading this. I appreciate any clinician who is in this field's opinion on my dear husband of 44 yrs case. thx and be well.....

@lac74 Great to hear that you're up ,walking without a cane. This helps us. My husband was diagnosed last week with a thigh Myxofibrosarcoma approx 5-6 cm. His oncologist/surgeon wants to shrink the sarcoma BEFORE the surgery........so 5 wks of radiation and 5 weeks to let the tissue/muscles heal and Then the surgery will happen - likely at end of May. We pray that clean margins are in the pathology report so as to avoid a second surgery. I'm ever so pleased that you started physio VERY soon after surgery! How many days before you could walk without a cane? What type of physio exercises worked best for you from the start? And did you go to physio 4 days a week from the start of recovery? I appreciate your sharing !

Following because I am in the same boat as your husband, Myxosarcoma in my thigh I am starting radiation tomorrow, 25 rounds. My husband and I will be married 44 years this year! Best wished to you both.

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.

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!