Diagnosed with sarcoma? Let's share

Jeff, I just read the article. The courage and faith that you and your wife showed during this unbelievable journey, as well as your willingness to try this radical treatment, are awe-inspiring. Surely your experience will benefit others as well.

I was diagnosed with Neuro-Fibro Sarcoma 12/05, after 5 years of being told the stabbing and shooting pain I was experiencing “was all in my head”, by multiple doctors. Initial biopsy resulted in a “benign” diagnosis because the facility I was at did not have experienced people reading the sarcoma samples. Luckily they did tell me I needed to have tumor removed, but at a different center. My surgeon was suspicious of the biopsy results from the start. Nine days after a nine hour surgery to remove the sarcoma from my brachial plexus, I received the diagnosis. I saw an oncologist at this highly respected teaching hospital and was told I didn’t need any further treatment. A scan 9 months later revealed the Sarcoma recurred. I then saw an oncologist at Siteman, a leading cancer center, and learned that I should have had radiation and chemo following my surgery, and scans every 3 months, not 9 months later! LESSON-ALWAYS GET A SECOND, MAYBE THIRD OPINION! My prognosis was bleak, inoperable, incurable, they’d try to slow its growth, first with 32 radiation treatments. The tumor grew 20% during that time and the next 2 months. I then sought consult at MD Anderson. They came to the same conclusion as my Siteman oncologist, and chemo was started. I would have chemo “the rest of my life, however long that might be”. Scans revealed tumor had vanished 3 months into my chemo. I had a total of 13 months of chemo when docs decided to try a chemo break, as I was still NED. That was 6/2008, and I’m still cancer free! I was moved to MD Anderson survivorship program 2/18 and released by my Siteman oncologist 8/18. While I have some challenging side affects from my treatments, dominant hand paralysis, limited right arm movement, oxygen dependent due to destruction of my lung, severe scoliosis due to lack of reconstruction after my surgery, I’m still alive and enjoying life. I have learned to quilt, and have babysat my now 5 year old granddaughter since her birth. There are certainly things I can no longer do, but that’s ok.

I can’t emphasize enough the importance of second opinions, even if you get “good news”. Also, an oncologist with experience treating Sarcomas is VERY important.

Unluckily, my cancer story has not ended, I was diagnosed with NET in my stomach 4/19.

I'm curious to know if this was a Phyllodes tumor?

What about cystosarcoma Phyllodes tumor in breast

Hi @johnsoncs1 and welcome to Mayo Clinic Connect. Have you been diagnosed with phyllodes tumor?

I don’t know much about that type. Mine was under my arm and was attached to the connective tissue between two ribs

This is us. My husband (Marty) was diagnosed with Chondrosarcoma in August of 2019. Two weeks later he had an external Hemipelvectomy. I'm Michele and it's nice to have another connection to other Sarcoma warriors.

@dancingreendog Welcome back to MayoClinicConnect, a community forum where we share advice and information! And I just love the name you chose!
How have you and your husband been doing since his surgery? Has he had to have chemo or radiation therapy?
I’ll bet that you have lots of helpful advice that you can give others. Will you be willing to share?

I'd be happy to pass on what we've learned. No chemo or therapy, they took clear margins and feel like they got it all. He's still getting 3 mo scans and so far, so good! He is doing well. with constant therapy and learning his prosthesis. Of course there's still times of frustration and missing his leg. Mostly that he can't do what he wants. He was always very active. However, he'll get there!

Just some feedback of incredible support and treatment I have received from my Mayo Team: 18 months later and I am easily walking 3 miles on a weekend! I am so appreciative of the surgeons at Mayo!