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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 | Dec 17, 2023
In reply to @joe1955 "Yes. No problem. It was located in the parking lot of a medical center and could..." + (show)
Profile picture for joe1955 @joe1955

Yes. No problem. It was located in the parking lot of a medical center and could be moved when needed to other facilities---yet rarely moved. It has ramps/stairs up to entrance, small waiting area that fit 2 people, and the machine. No problem.

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Helpful info about the mobile PET scan, @joe1955. Have you also been diagnosed with a sarcoma?

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1 reply
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joan450 | @joan450 | Dec 14, 2023

Myxoid Leiomyosarcoma. Surgery (tumor removal and radical total hysterectomy) on December 1, 2022. The biopsy of the tumor revealed it's true nature. My only symptoms were extreme consitpation, a bloated stomach, a bit of an ache in the area of my right ovary. Turned out to be a 15cm mass (yikes). I had a smaller reocurrence on the left side (vaginal cuff and a bit on my bladder) and surgery on October 17, 2023. All out and about to do radiation. Quite the journey. Day at a time over here. Today, I'm fine and feel fine.

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joan450 | @joan450 | Dec 14, 2023
In reply to @verena "Hello, I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I..." + (show)
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Hello,

I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I am meeting with the sarcoma team in Milwaukee in a week. I had a chest CT today and a PET scan on Wednesday. This came so fast, I have not come up for air. I have not slept in days. I am not even sure what questions to ask. I am glad I found this group.

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It moves fast, but take a deep breath, bring a friend with a note paper to meetings, and get second opinions if you want. You Dr. can recomend someone for the second opinion.

Hang in, stay on it, and take action when you have one to take.

I wish you the best....

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joan450 | @joan450 | Dec 14, 2023
In reply to @verena "I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I..." + (show)
Profile picture for verena @verena

I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I know it will be overwhelming. Thinking about how I am supposed to make decisions when I am still learning the language while at the same time really wanting action. None of us signed up for this.

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Ask for definitions and clarity. They have to slow down for you.

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joe1955 | @joe1955 | Dec 13, 2023
In reply to @liv38556 "I replied on this conversation thread once before I think. I’m Lois V. Married 43 years..." + (show)
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I replied on this conversation thread once before I think. I’m Lois V. Married 43 years with 2 grown children. I was dx’d with a soft tissue Sarcoma in 2021 on my left thigh and had it removed by a Surgical Oncologist at Vanderbilt Hsp in Nashville TN. We don’t live nearby to any Mayo hospitals. It seemed to stem from a dog bite I had 10 years prior. Vanderbilts RedCap team approached me about wanting me to be a part of a sarcoma study for 6 years. I agreed. They have sent me questions and they recently drew 5 vials of blood from me. A medical oncologist I saw after this wants me to have a Pet scan. I haven’t had it done yet. Has anyone heard of a mobile unit Pet Scan?

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Yes. No problem. It was located in the parking lot of a medical center and could be moved when needed to other facilities---yet rarely moved. It has ramps/stairs up to entrance, small waiting area that fit 2 people, and the machine. No problem.

REPLY
1 reply
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amyb5 | @amyb5 | Dec 12, 2023
In reply to @verena "Thanks you so much for letting me know. There are so many unknowns in my equation." + (show)
Profile picture for verena @verena

Thanks you so much for letting me know. There are so many unknowns in my equation.

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Yes there are. It’s a scary road to be on. If you let them know, Aurora has translators who can help you navigate.

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verena | @verena | Dec 12, 2023
In reply to @amyb5 "I have been a patient in the St Luke’s cancer center since 3/2021. They have been..." + (show)
Profile picture for amyb5 @amyb5

I have been a patient in the St Luke’s cancer center since 3/2021. They have been great. I am in good hands. I hope you have the same experience.

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Thanks you so much for letting me know. There are so many unknowns in my equation.

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1 reply
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amyb5 | @amyb5 | Dec 12, 2023
In reply to @verena "I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I..." + (show)
Profile picture for verena @verena

I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I know it will be overwhelming. Thinking about how I am supposed to make decisions when I am still learning the language while at the same time really wanting action. None of us signed up for this.

Jump to this post

I have been a patient in the St Luke’s cancer center since 3/2021. They have been great. I am in good hands. I hope you have the same experience.

REPLY
1 reply
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verena | @verena | Dec 12, 2023
In reply to @elcee "I was seen for leiomyosarcoma at Froedert in Milwaukee earlier this year. Expert clinicians. Hope they..." + (show)
Profile picture for elcee @elcee

I was seen for leiomyosarcoma at Froedert in Milwaukee earlier this year. Expert clinicians. Hope they can help you

Jump to this post

I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I know it will be overwhelming. Thinking about how I am supposed to make decisions when I am still learning the language while at the same time really wanting action. None of us signed up for this.

REPLY
2 replies
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elcee | @elcee | Dec 12, 2023
In reply to @verena "Hello, I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I..." + (show)
Profile picture for verena @verena

Hello,

I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I am meeting with the sarcoma team in Milwaukee in a week. I had a chest CT today and a PET scan on Wednesday. This came so fast, I have not come up for air. I have not slept in days. I am not even sure what questions to ask. I am glad I found this group.

Jump to this post

I was seen for leiomyosarcoma at Froedert in Milwaukee earlier this year. Expert clinicians. Hope they can help you

REPLY
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