Myxofibrosarcoma: What treatments did you have?

Posted by jonezzi @jonezzi, Sep 24, 2022

I was diagnosed with Myxofibrosarcoma. It was large and a high-grade tumor. I had my surgery and will start my radiation treatment next week. My oncologist also stated that chemotherapy scheduled. My pathology report came back with no evidence on malignancy. Is chemo still necessary. I know it is my decision just needed to get a second opinion.

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@enver

My CT Scan showed that the tumor is not touching the ribs, which is good news as surgery is simpler. When I see the surgeon on coming Thursday my question to him would be how soon does the surgery heal and what are the things I need to be careful about for smooth recovery....

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Those are all good questions to ask during your appointment on Thursday, @enver. I look forward to hearing what information you get during your appointment. I hope you will post an update.

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@enver

My CT Scan showed that the tumor is not touching the ribs, which is good news as surgery is simpler. When I see the surgeon on coming Thursday my question to him would be how soon does the surgery heal and what are the things I need to be careful about for smooth recovery....

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I also have myxofibrosarcoma.
Mine is in my right lower calf.
I too had surgery and during surgery had brachytherapy. Then 6 weeks later had more radiation. Now do ct and mri regularly to ck for re-occuranc.

My prayers are with you for your upcoming surgery.
If you have any questions please feel free to reach out.
🙏🙏🙏

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I had my surgery for Myxofibrosarcoma was on Thursday November 09. The tumor was surrounded by muscles and tissues, approximate size of the removed part was 10cm x 10 cm. They have sent it for biopsy. I am meeting the Doctor this Friday and may come to know more about the tumor.
I was discharged on Sunday and am back home. The Doctor's advise was to need a normal life (keep walking, do small exercises, normal diet, etc.). One thing I was advised not to do is to raise the left arm, which had the tumor removed, high. However there was specific exercise for left arm to avoid frozen shoulder. I am taking pain killers, antibiotics and anti-nausea tablets, along with two multivitamin tablets. There is very little pain at the moment.
By the grace of God everything went well.
I can share any other information I have....
I am sharing what what was removed in the surgery.
Take care...

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I had a large sarcoma cancer removed back in 2021. I am not totally sure of what kind of sarcoma it was. I get very few answers from the medical professionals. They don’t volunteer anything. It seemed to start from a dog bite I had over 10 years ago. It went as deep as my tendon but they didn’t have to cut into my thigh tendon to remove it. It left a gaping hole and they used a wound vac to close it up. I feel it’s still healing. My relatives out of state who 2 studied to become nurses I was told to drink lots of water as that is how it will heal. The doctors I have been seeing never told me that. They also didn’t put me on any antibiotics afterwards and while it was healing. They also didn’t refer me to physical therapy afterwards. I referred myself to physical therapy when I felt up to it. I have another growth growing on my upper nose by my eye. I’m told that one is Basel Cell Skin Cancer.

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I am recovering after my surgery on Nov. 09. I will be seeing my Oncologist for his opinion on way forward once Biopsy report is available.
Take care....

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Just found this site today. I had surgery on 11/13/23 to remove a mass on my hip. It was 8.5cm x 6cm and 3cm deep, it came back a myxofibrosarcoma. I see the surgeon tomorrow and hopefully have the stitches removed and this annoying drain. I really don't know what is in store yet. From what I have read radiation will be next after I see an Oncologist. A little scared for my family and myself, but we will get through this.

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I was diagnosed with a thigh Myxofibrosarcoma on August 2nd, had my first surgery on the 3rd and on the 9th, after the pathology report came out, I had my second surgery because the borders weren’t clean. Started physical therapy the day after my second surgery and radiotherapy 6 weeks later for 6 weeks. My tumor was a bit less than 5 cm.
Today I started to walk without a cane. Feel happy.

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@lac74

I was diagnosed with a thigh Myxofibrosarcoma on August 2nd, had my first surgery on the 3rd and on the 9th, after the pathology report came out, I had my second surgery because the borders weren’t clean. Started physical therapy the day after my second surgery and radiotherapy 6 weeks later for 6 weeks. My tumor was a bit less than 5 cm.
Today I started to walk without a cane. Feel happy.

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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.

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@thompta

Just found this site today. I had surgery on 11/13/23 to remove a mass on my hip. It was 8.5cm x 6cm and 3cm deep, it came back a myxofibrosarcoma. I see the surgeon tomorrow and hopefully have the stitches removed and this annoying drain. I really don't know what is in store yet. From what I have read radiation will be next after I see an Oncologist. A little scared for my family and myself, but we will get through this.

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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?

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@lac74

I was diagnosed with a thigh Myxofibrosarcoma on August 2nd, had my first surgery on the 3rd and on the 9th, after the pathology report came out, I had my second surgery because the borders weren’t clean. Started physical therapy the day after my second surgery and radiotherapy 6 weeks later for 6 weeks. My tumor was a bit less than 5 cm.
Today I started to walk without a cane. Feel happy.

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@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?

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