Myxofibrosarcoma: What treatments did you have?

@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 !

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.....

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!

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

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

@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?

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.

@lac74, walking without a cane is a huge accomplishment. I bet you're feeling happy. That's quite an accomplishment is such a short time - although I bet it didn't feel like a short time. You've been working hard to regain muscle and mobility. What tip would you offer to others who are new to this diagnosis?

Hi @thompta, how did the appointment with the surgeon go this week? It must feel good to have the stitches removed and the drain gone.

It's normal to be a little or a lot scared. I'm sure your family is worried too. You're not alone as there are others here who are walking the path just slightly ahead of you guiding you along.

Is radiation next for you? What questions do you have for others who've been there?

So happy to hear you are walking without your cane. Congratulations on your progress after such a difficult journey.
My myxofibrosarcoma took 1 1/2 years to diagnose. 1st surgery Sept 2020 and 2nd surgery Dec 2020.
Then had to be completely inmobile for one month. Then 3 months later 6 1/2 weeks radiation.
Then physical therapy.
It's been a long journey but so very grateful to still have my lower leg.