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Myxofibrosarcoma: What treatments did you have?
Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)Comment receiving replies
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.....
Replies to "My husband is in good health....active in sports....73yrs old....active with five grandkids. He noticed a lump..."
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.
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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.