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Moderator

Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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?

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

emattson | @emattson | Jan 25, 2023
In reply to @jeffk "The only doctor who was highly confident that he could rebuild the cricoid cartilage that the..." + (show)
@jeffk

The only doctor who was highly confident that he could rebuild the cricoid cartilage that the Chondrosarcoma had pushed into my airway and paralyzed a vocal cord. Dr. Moore had an unconventional procedure to keep all of my functionality, breathing, eating, and talking. A few of the world class doctors we saw recommended a total laryngectamy was the only way to remove the entire tumor. I strongly recommend you go see Dr. Moore. Please share that you reached out to me. Alternatively, I can call him and introduce you. Under any circumstances you need at least 3 to 4 opinions and they will all have a different approach. Let me know if I can provide you with anything else. God Speed!

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Jeff Thanks so much for your reply. I have now signed up with Mayo Clinic Connect and someone is going to call me soon so hopefully that can get me to Dr Moore but will keep you in ready reserve if needed! Couple questions for you - now that you are quite a few years down the road from your surgery, how have you done and are you pleased with where you are? Is there anything that you can no longer do and is your speaking, eating and swallowing functions satisfactory to you? Also, how old are you if I might ask as age can impact recovery time. Truly appreciate your input.

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1 reply
dtyre | @dtyre | Jan 26, 2023
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Small cell squamous

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jeffk | @jeffk | Jan 28, 2023
In reply to @emattson "Jeff Thanks so much for your reply. I have now signed up with Mayo Clinic Connect..." + (show)
@emattson

Jeff Thanks so much for your reply. I have now signed up with Mayo Clinic Connect and someone is going to call me soon so hopefully that can get me to Dr Moore but will keep you in ready reserve if needed! Couple questions for you - now that you are quite a few years down the road from your surgery, how have you done and are you pleased with where you are? Is there anything that you can no longer do and is your speaking, eating and swallowing functions satisfactory to you? Also, how old are you if I might ask as age can impact recovery time. Truly appreciate your input.

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I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.

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3 replies
jeffk | @jeffk | Jan 28, 2023
In reply to @jeffk "I am 70 years old and my major reconstruction surgery was October 24, 2016. I have..." + (show)
@jeffk

I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.

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As an aside, if you call the ENT department directly at 507.405.2935 and request an appointment with Dr. Eric Moore. Share your diagnosis because they really like unicorns with unique challenges. Best to you.

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pb82 | @barman | Jan 28, 2023
In reply to @tommie71 "May I ask your age? I am 71 and just starting to face it." + (show)
@tommie71

May I ask your age? I am 71 and just starting to face it.

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Of course. I'm 40.

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pb82 | @barman | Jan 29, 2023
In reply to @barman "Greetings. I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after..." + (show)
@barman

Greetings.
I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after removal of tumor). The surgery is already done and I'm currently recovering from it. The retroperitoneal tumor has been removed, but it has been noticed that there is still some residual left, and the doctors said that since it's situated a large area, radiation wouldn't work. Treatment through Chemotherapy is still not confirmed. They have been saying that it needs to be operated on over and over a numerous amount of times, and I have been considering alternate therapies and methods. Any suggestions on what path to take? Is there a treatment of such kind of liposarcoma without any other surgery methods?

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So and update in my case.. they recently found out that it was a high grade, grade 3 tumor of dedifferentiated liposarcoma. The surrounding mass was found out to be grade 2.

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1 reply
emattson | @emattson | Jan 29, 2023
In reply to @jeffk "I am 70 years old and my major reconstruction surgery was October 24, 2016. I have..." + (show)
@jeffk

I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.

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Jeff would love to speak with you directly. Private message me and let me know when would be a convenient time for a call. Many thanks Eric

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 29, 2023
In reply to @emattson "Jeff would love to speak with you directly. Private message me and let me know when..." + (show)
@emattson

Jeff would love to speak with you directly. Private message me and let me know when would be a convenient time for a call. Many thanks Eric

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Welcome @emattson. Please note that I removed your personal phone number from your message. Mayo Clinic Connect is a public forum. It is better to use the secure private message function to exchange personal contact information. As a new member, you will be able to send private messages in a few days. You can receive private messages any time.

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Terriebikes | @bicycle3 | Jan 29, 2023
In reply to @jeffk "I am 70 years old and my major reconstruction surgery was October 24, 2016. I have..." + (show)
@jeffk

I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.

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What type of sarcoma?

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Terriebikes | @bicycle3 | Jan 30, 2023
In reply to @barman "So and update in my case.. they recently found out that it was a high grade,..." + (show)
@barman

So and update in my case.. they recently found out that it was a high grade, grade 3 tumor of dedifferentiated liposarcoma. The surrounding mass was found out to be grade 2.

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I am driving to Manhattan on Sunday for a consultation at Sloan Kettering Monday morning. I will let you know what they say. The chemo here was not working and the new chemo sounded difficult but if I have to do that I will come back and do that it's called ebulinen.

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