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.

ellengrubb | @ellengrubb | Sep 17, 2023

I pray he can find an immunotherapy that will slow, stop or heal the sarcoma. They are nasty! Please keep this post updated on his progress.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 17, 2023
In reply to @mywimb569 "I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It..." + (show)
@mywimb569

I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It originated in his arm. He did rounds of chemo and after was in remission. Now he has areas in his lungs. Radiation treatments did not help.

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Hi @mywimb569 and @janetamyshapiro1956, you will find others talking about synovial sarcoma in this related discussions:
https://connect.mayoclinic.org/search/?search=synovial+sarcoma

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 29, 2023
In reply to @mickeyambrose49 "Thank you for your kind words. I have talked with my brother this morning and his..." + (show)
@mickeyambrose49

Thank you for your kind words. I have talked with my brother this morning and his wife and my husband too although he is going through radiation treatments rt now for prostate cancer. I try not to put too much on him. He’s had a rough journey but he is supportive. We are going to go to a movie and a few other things this weekend. I need a break from thinking about it . I work long hours so I really need city of hope to get those records to Mayo for me. I will call and message them Monday morning before I start working tho. Thanks again for your kind words. It means a lot. Do you know if they have a support group for Chondrosarcomas?

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@mickeyambrose49, you may also be interested in these related discussions:
- Chondrosarcoma
https://connect.mayoclinic.org/discussion/chondrosarcoma/
- Cricoid Chondrosarcoma
https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/
- Enchondroma, vs. Chondrosarcoma
https://connect.mayoclinic.org/discussion/enchondroma-vs-chondrosarcooma/

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Dream.catchr | @mickeyambrose49 | Sep 29, 2023

Here, I am with an update! Feeling, overwhelmed! I saw my oncologist at city of hope (COH) on Monday and she wants me to try the a fourth hormone blocker. Side effects are not something that I can live with and work. But that is the least of my worries right now I still away appointment with mayo clinic and little over two weeks from now for the huge 10cm x 2.2cm endochondroma which may actually be a Chondrosarcoma of my rt femor. My PCP and my oncologist fused to order an MRI for it and tell me I have to wait until I see mayo clinic. I have already waited a month. Two more weeks to go and hopefully I will have some answers as to what this thing is in my leg. On top of that when I saw my oncologist on Monday, she told me that my bloodwork revealed that I may have bone cancer. She said that she wanted to draw my blood again in two weeks and if it still looks like this, then she wants to do a bone marrow biopsy. It just seems as though my whole body is being eaten up by cancer and I am getting so tired of fighting it already because I can’t get anyone to listen to me or talk to me or see me. They just tell me I have to wait. And wait some more. Yet they tell me that cancer doesn’t wait. That is what the advertisement for COH on TV says cancer doesn’t weight, but they just keep telling me to wait. I almost feel like I am living in a Third World country because I can’t get a doctor to see me unless I wait and I certainly have no one to talk to about it. My oncologist at COH told me she could not speak to me about tumor in my leg and she did not want to share much information with me about the possibility that I might have bone cancer until she finds out for sure. So they just scare me and then send me home.

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EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @janetamyshapiro1956 "My neice as diagnosed with synovial sarcoma three years ago. She is now thirty. Did the..." + (show)
@janetamyshapiro1956

My neice as diagnosed with synovial sarcoma three years ago. She is now thirty. Did the t cell trial at MD Anderson. Looked like a miracle for a few months, then it was bag. Tumors are around heart and lung. She went back to Israel with her parents over a year ago and has been on low dose chemo, in and out of the hospital every other week. She recently had another T cell trial which apparently failed because my cousin, herbfather wrote me last night that scans show more tumors and others grown. The doctor told him she only has a few months. Anyone have anything we haven't done or thought of.? The doctors last year at MD Anderson told her she only had a few weeks to live, but the low dose chemo in Israel showed that wasn't true. If only AI was faster in changing all this.
Any ideas are greatly appreciated. Thanks

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I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

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2 replies
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @mywimb569 "I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It..." + (show)
@mywimb569

I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It originated in his arm. He did rounds of chemo and after was in remission. Now he has areas in his lungs. Radiation treatments did not help.

Jump to this post

I am 48 and was recently diagnosed with Synovial Sarcoma in my mediastinum. I am trying to learn more also. I was told this type of cancer is really rare and the location of mine is extremely rare. Blessings to you and your nephew.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 1, 2023
In reply to @everythinglucky "I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and..." + (show)
@everythinglucky

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

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Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences and encourage others as well as be encouraged by the stories that others will share.

I see in your post that you have had one tumor removed. How long ago was that surgery? What type of treatment plans are being explored regarding the larger tumor near the heart?

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1 reply
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @hopeful33250 "Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that..." + (show)
@hopeful33250

Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences and encourage others as well as be encouraged by the stories that others will share.

I see in your post that you have had one tumor removed. How long ago was that surgery? What type of treatment plans are being explored regarding the larger tumor near the heart?

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I had my first surgery on August 11th. Right now there are no treatment plans in place. When the larger tumor was removed, the doctors had no idea what type of cancer I had. They first told me that I had stage 4 Lung Cancer. They had several multidisciplinary meetings trying to determine what type of cancer I have. I was diagnosed with cancer in June and had a needle biopsy (of the large tumor) in July. They couldn't determine the cancer type from the first biopsy so they decided to remove the smaller tumor. They just found out on Wednesday (9/27) what type of cancer I have. I see a specialist on Wednesday this week to hopefully discuss a treatment plan.

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janetamyshapiro1956 | @janetamyshapiro1956 | Oct 1, 2023
In reply to @everythinglucky "I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and..." + (show)
@everythinglucky

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

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Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here is a link to all their trials for synovial sarcoma.
https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/clinical-trials

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1 reply
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @janetamyshapiro1956 "Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here..." + (show)
@janetamyshapiro1956

Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here is a link to all their trials for synovial sarcoma.
https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/clinical-trials

Jump to this post

Thanks for the information.

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