1. < Sarcoma
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 Sarcoma Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 26 9:46am
In reply to @buugii "Hi, I am wrinting from mongolia... my name is Bulgamaa...( Buugii). my son has osteosarcoma on..." + (show)
@buugii

Hi,
I am wrinting from mongolia... my name is Bulgamaa...( Buugii).
my son has osteosarcoma on his left hand. from dec.2022 .
We underwent a total of 12 rounds of chemotherapy and joint replacement surgery. In February 2024, the treatment was completed, and now, Every month giving regular tests, he returned to his normal life.

I am very happy to contact you... I would like to collect a lot of information about this disease and I will be happy to share what I know and feel with you.

Thank you , Buugii

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Welcome, @buugii. You may be our first member from Mongolia!

Such good news that your son has returned to normal life. This must have been so difficult as a parent and now such a relief. How is your son's mobility and use of his hand and arm?

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1 reply
celia16 | @celia16 | May 27 12:55am
In reply to @lb21ann "Thank you for following up with me. I have been on the fence about it. I..." + (show)
@lb21ann

Thank you for following up with me. I have been on the fence about it. I have been thinking about getting a 2nd opinion.

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How was the healing of the incision? I’m scheduled for surgery to have a large one removed from my side. I’m trying to gauge how uncomfortable I will be afterwards, for planning some events in the days following. Much pain? Swelling?

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yrobertson | @yrobertson | May 28 8:23am

Good morning, I am having a hard time right now. My husband has been diagnosed with Metastatic Sarcoma in his right shoulder. Praying for strength to help him through this, he is having significant pain in his arms.. Praying or each of you also.

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1 reply
lizbeth1 | @lizbeth1 | May 29 10:51pm
In reply to @yrobertson "Good morning, I am having a hard time right now. My husband has been diagnosed with..." + (show)
@yrobertson

Good morning, I am having a hard time right now. My husband has been diagnosed with Metastatic Sarcoma in his right shoulder. Praying for strength to help him through this, he is having significant pain in his arms.. Praying or each of you also.

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My husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I understand how you feel. His scapula, ball/ joint, and part of his humorous was amputated. He in managing better than expected as we navigate a new normal. Praying for you both through the upcoming challenges. The Mayo Clinic was exceptional and worked so well as a team. Grateful to be able to go tthere. Sending positive support to you both.

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2 replies
yrobertson | @yrobertson | May 30 8:17am
In reply to @lizbeth1 "My husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I..." + (show)
@lizbeth1

My husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I understand how you feel. His scapula, ball/ joint, and part of his humorous was amputated. He in managing better than expected as we navigate a new normal. Praying for you both through the upcoming challenges. The Mayo Clinic was exceptional and worked so well as a team. Grateful to be able to go tthere. Sending positive support to you both.

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Thank you so much, praying for you guys.

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buugii | @buugii | Jun 1 9:13am
In reply to @colleenyoung "Welcome, @buugii. You may be our first member from Mongolia! Such good news that your son..." + (show)
@colleenyoung

Welcome, @buugii. You may be our first member from Mongolia!

Such good news that your son has returned to normal life. This must have been so difficult as a parent and now such a relief. How is your son's mobility and use of his hand and arm?

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Hello,
My son's shoulder movement is still not completely normal. elbows and fingers are all moving normally. As soon as we came out of the operation, we saw his fingers moving and we cried uncontrollably. Now he is playing volleyball again. plays with the other hand without using the hand with the implant.
Thank you
Buugii

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 6 8:09pm
In reply to @lizbeth1 "My husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I..." + (show)
@lizbeth1

My husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I understand how you feel. His scapula, ball/ joint, and part of his humorous was amputated. He in managing better than expected as we navigate a new normal. Praying for you both through the upcoming challenges. The Mayo Clinic was exceptional and worked so well as a team. Grateful to be able to go tthere. Sending positive support to you both.

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Welcome @yrobertson. I'm so grateful that @lizbeth1 has walked this path just a few steps ahead of you and can offer support and understanding.

@yrobertson, I can imagine it is hard to see your husband in such pain. Has a treatment plan been discussed? What is next for you both?

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1 reply
yrobertson | @yrobertson | Jun 7 7:43am
In reply to @colleenyoung "Welcome @yrobertson. I'm so grateful that @lizbeth1 has walked this path just a few steps ahead..." + (show)
@colleenyoung

Welcome @yrobertson. I'm so grateful that @lizbeth1 has walked this path just a few steps ahead of you and can offer support and understanding.

@yrobertson, I can imagine it is hard to see your husband in such pain. Has a treatment plan been discussed? What is next for you both?

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Thank you for asking. No plan has been made yet. He has to have a Pet scan to see if it has spread and then we will know. I'm having a had time trying to not be emotional in front of him. I'm a therapist, but this one is my heart.

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whitt | @whitt | Jun 9 11:40pm

Pleomorphic in the retroperitoneal.

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