Myxofibrosarcoma

Posted by jonezzi @jonezzi, Sep 24 4:41pm

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.

Interested in more discussions like this? Go to the Cancer group.

Has anyone out there had a sarcoma cancer? I am just wondering.

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@jonezzi, that is such a good question. Is chemo still necessary?

Unfortunately, myxofibrosarcoma (MFS) is known to be a cancer that often comes back after treatment. I wonder if your cancer team wants to throw everything at it to make sure that the cancer cells are not only removed locally with surgery and radiation, but also cancer cells that possibly have moved to further parts of the body. Then chemo is a good systemic therapy.

Did you have lymph nodes removed at the time of surgery? Do they know if the cancer is fast growing or has spread?

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@funkynotes

Has anyone out there had a sarcoma cancer? I am just wondering.

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Yes I was diagnosed with Myxofibrosarcoma Sept 2020
In my right lower calf

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@4me

Yes I was diagnosed with Myxofibrosarcoma Sept 2020
In my right lower calf

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Hello @4me and welcome to Mayo Connect. I'm sorry to hear of your diagnosis of Myxofibrosarcoma. As you were diagnosed in 2020, I'm wondering how you are doing now?

Here is some information from Mayo Clinic's website about this disorder.

–Myxofibrosarcoma
https://www.mayoclinic.org/diseases-conditions/myxofibrosarcoma/cdc-20387740
The article indicates that the usual treatment is surgery. Was this your experience as well? Have you needed any other treatments?

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@4me

Yes I was diagnosed with Myxofibrosarcoma Sept 2020
In my right lower calf

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Welcome @4me. I hope you don't mind, but I moved your post about being diagnosed with myxofibrosarcoma to this new discussion that @jonezzi started just 2 days ago:
– Myxofibrosarcoma https://connect.mayoclinic.org/discussion/myxofibrosarcoma/

Jonezzi, will appreciate meeting someone else with this rare cancer.

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@colleenyoung

Welcome @4me. I hope you don't mind, but I moved your post about being diagnosed with myxofibrosarcoma to this new discussion that @jonezzi started just 2 days ago:
– Myxofibrosarcoma https://connect.mayoclinic.org/discussion/myxofibrosarcoma/

Jonezzi, will appreciate meeting someone else with this rare cancer.

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Hi Jonezzi
I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf.
I have had 2 surgeries.
During the 2nd surgery I also had radiation on my leg before the plastic surgeon did my skin graft.
Then I had an additional 6 weeks of radiation.
Which played havoc on my skin graft.
But happy to say that is done and my skin graft has healed. I was told chemo did not work on Myxofibrosarcoma by UCSF Stanford and UCD.
I have had 4 opinions.
Where was your tumor located.
It is very difficult to find someone with our cancer.
Looking forward to hearing from you.
4Me

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@hopeful33250

Hello @4me and welcome to Mayo Connect. I'm sorry to hear of your diagnosis of Myxofibrosarcoma. As you were diagnosed in 2020, I'm wondering how you are doing now?

Here is some information from Mayo Clinic's website about this disorder.

–Myxofibrosarcoma
https://www.mayoclinic.org/diseases-conditions/myxofibrosarcoma/cdc-20387740
The article indicates that the usual treatment is surgery. Was this your experience as well? Have you needed any other treatments?

Jump to this post

Hello Teresa
I am all done with my treatments. I finished May 2021.
I had 2 surgeries and during the 2nd surgery had radiation during the surgery and then they did my skin graft.
Then had 6 more weeks of radiation.
Doing cts every 3 mo. Because our cancer has a tendency to go to the lungs. And mri every 6 mo. I was told by UCSF,Stanford and UCD Chemo would not work on Myxofibrosarcoma on my leg.
Tha k you
Fir such a wonderful site
4me

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@4me

Hello Teresa
I am all done with my treatments. I finished May 2021.
I had 2 surgeries and during the 2nd surgery had radiation during the surgery and then they did my skin graft.
Then had 6 more weeks of radiation.
Doing cts every 3 mo. Because our cancer has a tendency to go to the lungs. And mri every 6 mo. I was told by UCSF,Stanford and UCD Chemo would not work on Myxofibrosarcoma on my leg.
Tha k you
Fir such a wonderful site
4me

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Hello @4me

I am so pleased that you came back to share a bit about your journey with Myxofibrosarcoma. It appears that you have regular follow up now. That is great!

I had not heard of having radiation during a surgery. Is this a procedure that is done specifically for Myxofibrosarcoma?

If you are comfortable sharing more, what symptoms led to the diagnosis of Myxofibrosarcoma on your leg?

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@hopeful33250

Hello @4me

I am so pleased that you came back to share a bit about your journey with Myxofibrosarcoma. It appears that you have regular follow up now. That is great!

I had not heard of having radiation during a surgery. Is this a procedure that is done specifically for Myxofibrosarcoma?

If you are comfortable sharing more, what symptoms led to the diagnosis of Myxofibrosarcoma on your leg?

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March 2019
I noticed a bump when I was shaving my leg.
It was the size of a boulder marble.
I went to the Dr. and she said you must have bumped your leg and I said I know my body and I didn't bump my leg.
After another appt. they sent me to do a ct to ck for blood clot.
Nothing was found.
So went on with life. Then in Nov 2019 at my Orthopedic appt she did not like the looks of my bump it now had doubled in size. She sent me for a mri of my leg.
But unfortunately nothing was found even though it was a size of a walnut now.
So again went on with life
Then in March 2020 it was now the size of a plum and was very tight and a bit uncomfortable.
So went to a vascular surgeon because it felt like it had a pulse.
The surgeon thought it was a AVM which is when your arteries and viens are all tangled together.
Which is also very rare especially in the leg.
So had surgery Sept 2020.
Went back a week later to get stitches out.
And the Dr. had tears in his eyes and said I am very sorry to tell you that you have a very rare cancer called Myxofibrosarcoma.
The pathologist in Sacramento could not identify the tumor and it was sent off to Boston and was diagnosed as Myxofibrosarcoma.
I feel the vascular surgeon saved my life and am forever grateful to him.
And for his kindness.
He then spent another hr with me getting me a pet scan in 2 days and appt with surgeon later that week.
When you have cancer surgery u really want to take everything out the 1st time and have clean margins.
So I was in desperate need of another surgery.
This surgeon in Sacramento is a very good surgeon but had no experience with Myxofibrosarcoma.
So was referred to UCSF.
Now covid is in full swing.
So all appts were on Zoom.
Met with surgeon.
Radiologist
Plastic Surgeon
Oncologist
Orthopedic oncologist.
2nd surgery was then on Dec. 1 2020.
No one was allowed at the hospital with you so I hired a car to take me from Folsom to San Francisco at 3am. I am a caregiver for my husband and my father so they stayed at home.
Surgery lasted 6 1/2 hrs..
Was in hospital for 5 nites.
First thing I asked when I woke up is my leg still there because they didn't know going in how close tumor was to the bone. So happy to say I have my leg.
They said you need to go to rehab for a month I said absolutely not I work out every day and am strong and going home.
There were no visitors allowed at the hospital so was glad to be going home.
My driver came back and took me home.
1 week later back down to San Francisco to get stitches and my drain out. Thank goodness for my driver.

I had to stay in bed for 30 days because skin grafts do not heal in the calf if you walk on your leg.
So just hopped to the bathroom.
Then March 2021 started 6 weeks of radiation.
You never want to radiate a new skin graft but we had no choice.
They even put a gel bolice a little larger than my scar to make the radiation burn even worse. To make sure we were killing everything.
It turned to just mush.
At 5 1/2 weeks they took the bolice off during radiation because it was just to burnt.
Glad that was over. Soon as radiation ended went to plastic surgeon to try and save my skin graft.
And I am happy to say they were able to save it.
It's a bit beat up but it's there.
If it comes back they said it would be difficult to save my leg.
I am constantly cking my whole leg for a any size of a bump.
Sorry so long .

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@4me

March 2019
I noticed a bump when I was shaving my leg.
It was the size of a boulder marble.
I went to the Dr. and she said you must have bumped your leg and I said I know my body and I didn't bump my leg.
After another appt. they sent me to do a ct to ck for blood clot.
Nothing was found.
So went on with life. Then in Nov 2019 at my Orthopedic appt she did not like the looks of my bump it now had doubled in size. She sent me for a mri of my leg.
But unfortunately nothing was found even though it was a size of a walnut now.
So again went on with life
Then in March 2020 it was now the size of a plum and was very tight and a bit uncomfortable.
So went to a vascular surgeon because it felt like it had a pulse.
The surgeon thought it was a AVM which is when your arteries and viens are all tangled together.
Which is also very rare especially in the leg.
So had surgery Sept 2020.
Went back a week later to get stitches out.
And the Dr. had tears in his eyes and said I am very sorry to tell you that you have a very rare cancer called Myxofibrosarcoma.
The pathologist in Sacramento could not identify the tumor and it was sent off to Boston and was diagnosed as Myxofibrosarcoma.
I feel the vascular surgeon saved my life and am forever grateful to him.
And for his kindness.
He then spent another hr with me getting me a pet scan in 2 days and appt with surgeon later that week.
When you have cancer surgery u really want to take everything out the 1st time and have clean margins.
So I was in desperate need of another surgery.
This surgeon in Sacramento is a very good surgeon but had no experience with Myxofibrosarcoma.
So was referred to UCSF.
Now covid is in full swing.
So all appts were on Zoom.
Met with surgeon.
Radiologist
Plastic Surgeon
Oncologist
Orthopedic oncologist.
2nd surgery was then on Dec. 1 2020.
No one was allowed at the hospital with you so I hired a car to take me from Folsom to San Francisco at 3am. I am a caregiver for my husband and my father so they stayed at home.
Surgery lasted 6 1/2 hrs..
Was in hospital for 5 nites.
First thing I asked when I woke up is my leg still there because they didn't know going in how close tumor was to the bone. So happy to say I have my leg.
They said you need to go to rehab for a month I said absolutely not I work out every day and am strong and going home.
There were no visitors allowed at the hospital so was glad to be going home.
My driver came back and took me home.
1 week later back down to San Francisco to get stitches and my drain out. Thank goodness for my driver.

I had to stay in bed for 30 days because skin grafts do not heal in the calf if you walk on your leg.
So just hopped to the bathroom.
Then March 2021 started 6 weeks of radiation.
You never want to radiate a new skin graft but we had no choice.
They even put a gel bolice a little larger than my scar to make the radiation burn even worse. To make sure we were killing everything.
It turned to just mush.
At 5 1/2 weeks they took the bolice off during radiation because it was just to burnt.
Glad that was over. Soon as radiation ended went to plastic surgeon to try and save my skin graft.
And I am happy to say they were able to save it.
It's a bit beat up but it's there.
If it comes back they said it would be difficult to save my leg.
I am constantly cking my whole leg for a any size of a bump.
Sorry so long .

Jump to this post

What a remarkable story, @4me. You advocated for yourself, got second opinions and followed your instincts. When dealing with rare diagnoses, it is so important to keep searching like you did.

So how are you feeling now? Do you still need to have regular follow up tests?

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