1. < Sarcoma
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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.

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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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 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
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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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
Moderator
Colleen Young, Connect Director | @colleenyoung | May 24 9:29pm
In reply to @susykdunn "I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How..." + (show)
@susykdunn

I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How is your daughter doing? I also have never met anyone with this type

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Welcome, @susykdunn. I'm tagging @boston2006 to make sure they see your question to them. I'm also mentioning @truk182 who has experience with myofibroblastic sarcoma.

Susy this is a recent diagnosis for you. How are you doing? What treatment(s) have you had?

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debscan68 | @debscan68 | May 22 6:29am
In reply to @mickeyambrose49 "Good morning! My heart goes out to you. Ie been praying for you since I read..." + (show)
@mickeyambrose49

Good morning! My heart goes out to you. Ie been praying for you since I read your comments yesterday. I didn’t have time to respond but I haven’t been able to get you out of my mind. You must be terrified. Those things they want to do to you to save your life will also remove your quality of life? Is that how you see it?? I know sometimes it seems like we are backed in a corner and we aren’t given a choice. My first oncologist at City of Hope said to me when I told her I didn’t want to take hormone blockers (for breast cancer I had removed)“what are your options?” That was a slap in my face. I realtor I want to live I have to take them. I getting ready to start my 4th hormone blockers. I have bad arthritis and when I take the hormone blockers I become crippled. I limp and I can’t get out of my chair. I’m not a heavy person so it’s not my weight. It induces excruciating pain in all my joints. It’s aweful. So idk what I’m going to do. Now I’m faced with this possibility of bone cancer and I hear your story and I just can’t imagine how you must feel. I’m so sorry you are going through all this. You have had to make some life preserving decisions and I’m sure it’s not been easy. Do you have family and friend support? I’m curious what your symptoms were. What brought you to the doctor in the first place? You are right. . . . You are too young to be going through all of this. Did they say what causes it? You said it’s possibly genetic so maybe that IS the cause. The doctors I see just keep telling me “you have bad genes.” 🥲 I will keep praying for you.

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How are you doing? I haven't been on here in quite a while. I had a successful surgery and now I am learning to walk on my own again. (I can walk but with a walker most of the time.) I still have pain after 6 months but I will have to wait about 1 year or so to find out where the pain will actually be for life. Now to get through my scans every 3 months without any setbacks. The colostomy doesn't bother me a bit but cathing myself? That's another story...I HATE it. I can't even wear underwear anymore. I'm stuck with the adult diapers. I guess I shouldn't ever complain because my AWESOME surgeon/Dr. has given me my life. I will be forever thankful for everyone that was involved in my surgery and care. I met a lot of great people being in the hospital for 1 month and then moving on to rehab. I was so happy to go home and have come a long way since surgery.

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richard515 | @richard515 | May 19 6:22am

I am Richard. I am 70. I have differentiated chondrosarcoma. Primary site right femur bone and soft tissue. I have 5 secondary tumours. Right humerus. 3 in the left femur and one left hip. I am on a clinical trial using Tibsovo to address the IDH1 gene mutation. Next PET scan on the 29th May. Keen to hear from anyone who knows anything . Thank you.

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buugii | @buugii | May 19 4:16am

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
REPLY
1 reply
susykdunn | @susykdunn | May 17 8:11pm
In reply to @boston2006 "My daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another..." + (show)
@boston2006

My daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another patient with same cancer. Would love to connect with anyone who may have had same cancer.

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I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How is your daughter doing? I also have never met anyone with this type

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