Diagnosed with sarcoma? Let's share

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi’s sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let’s get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

@sherirp

Thanks so much for your reply! I am seeing a breast surgeon today and will know more about my sarcoma team. I know we can beat this!

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Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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@colleenyoung

Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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I have started aggressive chemo treatment first, then planning mastectomy in January. They will do genomic testing when I have surgery. I am currently doing well but just started chemo a few days ago.

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@colleenyoung

Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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I had my surgery 2.5 years ago. I am slowly feeling better. From what I understand, I am cancer free. If I get recurrence, then genomic testing would be done.

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In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above the knee). I completed the five weeks of radiation and was impressed with the professionalism and individual care provided by the radiation oncology department. Other than fatigue and the burn appearance to the leg (that really appeared two weeks after the completion of radiation), the radiation had minimal other side effects. The radiation worked well to minimize the impact of the tumor prior to surgery. Now two months following surgery (that was very impressively performed by the Mayo teams), I wonder how others with invasive leg surgery (particularly if there are others with functional flaps) worked through rehab. Chris

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@creedyfly

In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above the knee). I completed the five weeks of radiation and was impressed with the professionalism and individual care provided by the radiation oncology department. Other than fatigue and the burn appearance to the leg (that really appeared two weeks after the completion of radiation), the radiation had minimal other side effects. The radiation worked well to minimize the impact of the tumor prior to surgery. Now two months following surgery (that was very impressively performed by the Mayo teams), I wonder how others with invasive leg surgery (particularly if there are others with functional flaps) worked through rehab. Chris

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Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have myxoid liposarcoma. I hope they will return to share experiences with you.

In the meantime, back to you Creedyfly. Have you started rehab? What concerns you about rehab with composite functional thigh flaps?

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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.

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@colleenyoung

Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have myxoid liposarcoma. I hope they will return to share experiences with you.

In the meantime, back to you Creedyfly. Have you started rehab? What concerns you about rehab with composite functional thigh flaps?

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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.

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@creedyfly

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.

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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?

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@lisalucier

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?

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None yet. No weight bearing at this time.

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@jeffk

Hello Deb, I hope that this note finds you in great health! My wife and I were at Mayo on Monday for my first full year annual check-up and I am delighted to report that I ma totally cancer free, the reconstruction sight looks pristine and there has been no shrinkage at the sight as well. I am exercising and running and having the time of my life with our grandchildren. I look forward to hear of your progress and wish you well. Your fellow survivor and thriver, Jeff

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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.

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@jeffk

Deb, Hope this finds you well and look forward to learn how your recovery continues to progress. On April 12th Mayo published an article concerning my journey and I wanted to share it with you. The following link will take you to the sight; the article is titled “Retaining His Voice With Radical Treatment” https://sharing.mayoclinic.org

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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.

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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.

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