Diagnosed with sarcoma? Let's share

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

What about cystosarcoma Phyllodes tumor in breast

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

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.

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'm so glad to hear this news! Thank you for sharing your information -- as a new patient, I greatly appreciate it. Wishing you all the best.

None yet. No weight bearing at this time.

Hi, @creedyfly - I'd like to tag other members in this discussion who may have input on invasive leg surgery (particularly if there are others with functional flaps) and rehab, especially regarding the length of time to regain the ability to walk and be less dependent. Hoping @udderplace @kathythornjohnson and @godsgotthis will return and share any experiences they've had with leg surgery. Though this member talked about leg surgery for a different type of sarcoma, @boostar also may have some thoughts, as may @wsh66. I'd also like you to meet @merpreb.

creedyfly, wondering what your rehab has entailed thus far?

Really interested in the length of time to regain ability to walk and be less dependent? I am still no weight bearing for at least 30 days.

The coccus I’ve unit of centracare in St Cloud has benn very helpful. In particular, the exercises to increase my visual space borders This involves using thumb tracking excercises.