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.

Interested in more discussions like this? Go to the Sarcoma Support Group.

@verena

@ltj61 My doctors are at Milwaukee's Aurora St Luke's Medical Center. Go cheeseheads.
I was diagnosed with a Myxofibrosarcoma in my right thigh last November. I remember how scared I was of that initial meeting with the entire Sarcoma team. One of the first things I asked was how many of my type of Sarcoma they had treated and nobody was offended. At the end, we - not just they- had a treatment plan. I had radiation and surgery.
Early on, I reached out to Imerman's Angels and have/had a wonderful one on one mentor who had gone thru pretty much the same. Please check them out if you think that would help you https://imermanangels.org/. Best Wishes.

Jump to this post

@verena I actually had my appt today with the radiation oncologist, nurse practitioner and medical oncologist. My PET scan thank goodness came back clear so I’ll be starting radiation followed by surgery as well. Both doctors are confident the risk of recurrence is low. I feel so much better having the info and an actual plan. The waiting and fear of unknowns was literally hell for my family and me. Thank you so much for reaching out. Connecting with people going through or who have gone through this is so helpful. Best wishes to you as well!

REPLY
@ljt61

Thank you so much Michelle and Chuck. I can’t tell you how much your words mean. Good to hear you both are doing well! I’m going be treating at Froedtert & the Medical College of WI. They are supposedly a top ranked center but one of my fears is being such a rare “c” they may not be as experienced as I need. Can you give me some tips/questions to ask at my appointment next week? Can I ask where you all have been treating? Thank you again, you have restored some of my faith and emotional well being, it’s really so appreciated!

Jump to this post

@ltj61 My doctors are at Milwaukee's Aurora St Luke's Medical Center. Go cheeseheads.
I was diagnosed with a Myxofibrosarcoma in my right thigh last November. I remember how scared I was of that initial meeting with the entire Sarcoma team. One of the first things I asked was how many of my type of Sarcoma they had treated and nobody was offended. At the end, we - not just they- had a treatment plan. I had radiation and surgery.
Early on, I reached out to Imerman's Angels and have/had a wonderful one on one mentor who had gone thru pretty much the same. Please check them out if you think that would help you https://imermanangels.org/. Best Wishes.

REPLY
@ljt61

Thank you so much Michelle and Chuck. I can’t tell you how much your words mean. Good to hear you both are doing well! I’m going be treating at Froedtert & the Medical College of WI. They are supposedly a top ranked center but one of my fears is being such a rare “c” they may not be as experienced as I need. Can you give me some tips/questions to ask at my appointment next week? Can I ask where you all have been treating? Thank you again, you have restored some of my faith and emotional well being, it’s really so appreciated!

Jump to this post

You need to go to a Sarcoma Center, and I just looked and they are one. https://www.froedtert.com/sarcoma So good news there!

As for questions, I would ask about what you are concerned about. One thing I learned is that I was being given so much information, and it was almost as if they expected me to know what they were talking about (I didn't). I finally just asked my radiation oncologist flat out "Can someone just tell me what's going on, cause I'm lost!", and God bless him, he replied "Alright, let's get into it" and proceeded to spend almost an hour with me just laying it all out, the good, the bad, and the ugly. It helped so much. If you feel lost, just say so. Your medical team absolutely wants to help you, but you need to tell them what help you need.

REPLY
@chuck138

Welcome to the shittiest of clubs! I remember that anxiety, stress, and anger so very well. While I don't know anything about your specific situation, I can share what I went through so far. While it's certainly been a challenge, with many hurdles, for me personally the actual experience wasn't nearly as bad as I imagined. I got diagnosed with a high grade sarcoma in my thigh, Thanksgiving 2022. Surgery February 2024, followed by radiation, physical therapy, etc. My last scans have all been clean, and overall I'm doing pretty well. Even went kayaking over Memorial day weekend. I'm only sharing this so you know that it's not all doom and gloom. Ignore the statistics, because you are not one.

The best advice I have is to process the information as it comes, not as you imagine it. In other words, deal with today's problems, and not the future unknowns. What you imagine may be worse than the reality, or may not even happen at all. You already have plenty of real world worries, no point in adding new ones. Don't get too high on good news, and don't get too low on setbacks. Deal with each day as it comes. Feel free to message me if you have questions. While every treatment plan is different, there are commonalities.

Jump to this post

Thank you so much Michelle and Chuck. I can’t tell you how much your words mean. Good to hear you both are doing well! I’m going be treating at Froedtert & the Medical College of WI. They are supposedly a top ranked center but one of my fears is being such a rare “c” they may not be as experienced as I need. Can you give me some tips/questions to ask at my appointment next week? Can I ask where you all have been treating? Thank you again, you have restored some of my faith and emotional well being, it’s really so appreciated!

REPLY
@ljt61

I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you

Jump to this post

Welcome to the shittiest of clubs! I remember that anxiety, stress, and anger so very well. While I don't know anything about your specific situation, I can share what I went through so far. While it's certainly been a challenge, with many hurdles, for me personally the actual experience wasn't nearly as bad as I imagined. I got diagnosed with a high grade sarcoma in my thigh, Thanksgiving 2022. Surgery February 2024, followed by radiation, physical therapy, etc. My last scans have all been clean, and overall I'm doing pretty well. Even went kayaking over Memorial day weekend. I'm only sharing this so you know that it's not all doom and gloom. Ignore the statistics, because you are not one.

The best advice I have is to process the information as it comes, not as you imagine it. In other words, deal with today's problems, and not the future unknowns. What you imagine may be worse than the reality, or may not even happen at all. You already have plenty of real world worries, no point in adding new ones. Don't get too high on good news, and don't get too low on setbacks. Deal with each day as it comes. Feel free to message me if you have questions. While every treatment plan is different, there are commonalities.

REPLY

Keeping your faith, whatever that is for you, is important. Positive attitude. I'm 5 years clean. My surgeon was sure it would come back in one year.
I was stage 3 high grade. Prayers

REPLY
@ljt61

I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you

Jump to this post

Welcome, @ljt61. I can imagine that you are frightened. But you are not alone. I'm tagging fellow members like @4me @liv38556 @jonezzi @marshelle @chuck138 @michellebanta @lgshoaf @enver @thompta who have experience with myxofibrosarcoma.

This is all so new for you @ljt61 and like you said you're still in a state of shock and on an emotional rollercoaster. Waiting is the hardest part. I bet you have a lot of thoughts and questions whirling about in your head as you wait for your appointments with the radiation and medical oncology.

Have you started making a list of questions? Not sure even what to ask?

REPLY

I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you

REPLY

I hope you receive your information on what kind of sarcoma you have.
Yes I have heard water and lots of protein help with the healing. Prayers for continued good health.

REPLY
Please sign in or register to post a reply.