Myxofibrosarcoma: What treatments did you have?

While my mom is waiting for the doctors locally to finalize her treatment options (hopefully surgery) she has been in more pain due to the location of the high-grade sarcoma tumor(s) 🙁 Any recommendations on pain management to ask the doctor about? Anything holistic to help her sleep better. I am going to recommend we call the Mayo next week after she checks with her insurance.

@jkrause3 thank you for your response. I am glad your recovery is going well. If my mother's doctor team don't act with more urgency I am going to see about getting her in the Mayo Clinic. I am concerned about the size of the tumor and I know they have to run the tests and do the t MRIs but it seems they are scheduling them too far apart. First they said they wanted surgery done by this week and now they don't know. I pray she can get the treatment she needs either here locally or at the Mayo where the specialize in sarcomas. I pray for your continued healing and a full cancer-free recovery.

I was clear of the cancer after the tumor was removed from my leg, but it appeared later in my hip and lungs. I recommend following the procedure the doctor recommends.

@cherylkolson

Ask about Proton Radiation - it targets the tumor and is far less invasive on healthy tissue
Also I had inter operative radiation during surgery while the leg was open to get an minute particles - all of my post surgery margins were clear of cancer

@cherylkolson

I highly recommend Dr. Goulding at Mayo she saved my leg and I have full use of it
my tumor was over 5 lbs in my calf and I lost a lot of muscle but she was able to save enough to give me mobility

Also to note I DID NOT have Chemo as the ONcologist stated for the sarcoma it was not effective

@kl0409 I was seen within 1 week and from there Mayo setup with the Surgeon, Oncologist, Radiologist , plastic Surgeon and also Physical Therapy
My tumor was quite large it weighted close to 5 lbs. - I did 25 Pronto Radiation Treatments - was enrolled in a clinical trial for pre surgery Physical Therapy concentrate on overall body strength - balance, and training me to use one leg for a period of time this was extremely helpful as I felt I could participate in my own recovery - after the radiation I had to wait 3 weeks for surgery - very important to keep the area well hydrated - I used a radiation therapy lotion daily which really helped - I had to most skin damage after the radiation was completed - but it amounted to mostly a sunburn - Because of the size of the tumor it was anticipated that I would need to have a skin flap taken from my thigh to cover the surgical area - I was really lucky there the size of the tumor had acted like a skin ex pander and so the Flap was not needed. Surgery was 9 hours with I night in Intensive care - I spent 4 nights in the hospital but daily I got up non weight bearing as worked with the PT team with a walker - I used a wheelchair and walker for 6 weeks and then received a Boot cast for walking and began PT - I progressed out of the Boot cast in 2 weeks and was able to walk unassisted - Biggest issue was incision healing where the radiation was concentrated - I was given Medical Bee Honey for the area and that worked really well -
Key is to do your exercises and to move as much as possible It made all the difference in my recovery - I still has a lot of numbness in the leg and my foot but I attend workouts 3 times a week and walk daily
Hope this helps

@cherylkolson I am sorry to hear this. My mom is currently still having tests run at our local hospital and at first they said surgery but now they need another MRI. I am concerned because of the size of the tumor and location. I am wondering if she needs to get into the Mayo clinic as they have more expertise.

@cherylkolson I agree. That should be something that in standard once someone has certain symptoms.

@jkrause3 I'm sorry about your diagnosis. How long did it take for you to get in and be treated? I hope you are doing well.