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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.

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Colleen Young, Connect Director | @colleenyoung | Jul 8 8:04pm
In reply to @banana11 "My Myxofibrosarcoma is in my hip area! I had 25 radiation treatments and receive Ketruda every..." + (show)
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My Myxofibrosarcoma is in my hip area! I had 25 radiation treatments and receive Ketruda every 3 weeks! My tumor shrunk, but damage done to top of femur and small part of pelvis! Hip disarticulation is scheduled! I feel fine, no medications, my walking is normal, and I perform all daily activities! The reality of surgery mid July is starting to hit me! Trying to keep a positive recovery plan, and prepping for PT and prosthetic use! I was an athlete all my life and my mind won’t accept failure! I hope it serves me well!

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@banana11, when is surgery? How are you doing with getting things ready for your recovery?

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banana11 | @banana11 | Jul 9 10:04am
In reply to @colleenyoung "@banana11, when is surgery? How are you doing with getting things ready for your recovery?" + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@banana11, when is surgery? How are you doing with getting things ready for your recovery?

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@colleenyoung
July 15! This last week has been mentally tough!! Getting real now!! I’m prepared but not prepared!

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juliska32 | @juliska32 | Jul 10 9:04am

I recently was diagnosed with leiomyosarcoma in retroperitoneal area. Had tumor removed with positive margins and will be starting chemo. I will be starting Doxorubicin and Dacarbazine, i had a second opinion about replacing Dacarbazine with Trabectin. Curious if anyone else is using either therapy.
Thank you

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Colleen Young, Connect Director | @colleenyoung | Jul 22 8:04pm
In reply to @banana11 "@colleenyoung July 15! This last week has been mentally tough!! Getting real now!! I’m prepared but..." + (show)
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@colleenyoung
July 15! This last week has been mentally tough!! Getting real now!! I’m prepared but not prepared!

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@banana11, thinking of you as you recover from surgery. I look forward to hearing from you when you're ready.

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Colleen Young, Connect Director | @colleenyoung | Jul 22 8:10pm
In reply to @juliska32 "I recently was diagnosed with leiomyosarcoma in retroperitoneal area. Had tumor removed with positive margins and..." + (show)
Profile picture for juliska32 @juliska32

I recently was diagnosed with leiomyosarcoma in retroperitoneal area. Had tumor removed with positive margins and will be starting chemo. I will be starting Doxorubicin and Dacarbazine, i had a second opinion about replacing Dacarbazine with Trabectin. Curious if anyone else is using either therapy.
Thank you

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@juliska32, welcome. I'm tagging a few members like @gemmalt @tjmc @fwaynes @ctflyr who have mention doxorubicin+ trabectedin or trabectedin alone. They may have experiences to share.

Juliska, you may also be interested in this related discussion:
- What are the treatment options for metastatic leiomyosarcoma? https://connect.mayoclinic.org/discussion/metastatic-leiomyosarcoma/

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mzfeek | @mzfeek | Jul 23 8:29am
In reply to @colleenyoung "Hi @johnsoncs1 and welcome to Mayo Clinic Connect. Have you been diagnosed with phyllodes tumor?" + (show)
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Hi @johnsoncs1 and welcome to Mayo Clinic Connect. Have you been diagnosed with phyllodes tumor?

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@colleenyoung I was diagnosed in June 2026 with malignant phyllodes tumor

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vssanf24 | @vssanf24 | Jul 29 5:19pm

My son has been diagnosed with Epithilioid Sarcoma. He had surgery in February to remove a tumor in his low back, but after three months, it has spread to his lungs.

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Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @mzfeek "@colleenyoung I was diagnosed in June 2026 with malignant phyllodes tumor" + (show)
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@colleenyoung I was diagnosed in June 2026 with malignant phyllodes tumor

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@mzfeek, welcome. You may wish to take part in these related discussions:

- Anyone diagnosed with Phyllodes tumor?
https://connect.mayoclinic.org/discussion/phyllodes/
- Anyone diagnosed with spindle cell sarcoma in the breast?
https://connect.mayoclinic.org/discussion/anyone-diagnosed-with-spindle-cell-sarcoma-in-the-breast/

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vssanf24 | @vssanf24 | 23 hours ago

My son was diagnosed with Epithilioid Sarcoma and had surgery in February to remove a tumor in his back. His very first scans after three months showed that it had metastasized to his lungs. I have been searching for any information I can get on his specific type of sarcoma. His doctors said his is a very rare type and that chemotherapy doesn’t typically work on his type. He just started his second round of chemo this week, and will have scans again in three weeks. If they haven’t shrunk, they are going to stop chemo and the next step is a clinical trial. His diagnosis is Epithelioid
hemangioendothelioma and is the proximal type.

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ctflyr | @ctflyr | 9 hours ago
In reply to @vssanf24 "My son was diagnosed with Epithilioid Sarcoma and had surgery in February to remove a tumor..." + (show)
Profile picture for vssanf24 @vssanf24

My son was diagnosed with Epithilioid Sarcoma and had surgery in February to remove a tumor in his back. His very first scans after three months showed that it had metastasized to his lungs. I have been searching for any information I can get on his specific type of sarcoma. His doctors said his is a very rare type and that chemotherapy doesn’t typically work on his type. He just started his second round of chemo this week, and will have scans again in three weeks. If they haven’t shrunk, they are going to stop chemo and the next step is a clinical trial. His diagnosis is Epithelioid
hemangioendothelioma and is the proximal type.

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@vssanf24.....is there any possibility the lung mets could be treated via ablation or radiation therapy? You might consider a second opinion from Mayo, as you didn't mention where he is being treated.

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