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.

EverythingLucky | @everythinglucky | Dec 1, 2023

Sorry to hear that. Do you have a treatment plan yet and a good support system in place?

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mimih | @mimih | Nov 30, 2023
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Just diagnosed with sarcoma in chest area

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 22, 2023
In reply to @sdrichmond "Hello Everyone, My name is Scott. I live in north central NC. Diagnosed with angiosarcoma in..." + (show)
@sdrichmond

Hello Everyone,
My name is Scott. I live in north central NC. Diagnosed with angiosarcoma in April 2023. ENT doctors wanted to do immediate surgery. Quite radical surgery because cancer is on my face near eyelids. I opted for chemo first. Completed 5 cycles of chemo now on 7 weeks of radiation (electron). Explored proton but it would have required extended stay from home. It's a journey! Just trying to connect with others and continue learning. Not much historical medical knowledge because of the rare occurrences of angiosarcoma. Very aggressive and can't be taken lightly.

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Welcome, Scott.
You may also be interested in joining this discussion:
- Is anybody dealing with an angiosarcoma?
https://connect.mayoclinic.org/discussion/angiosarcoma/
Having angiosarcoma so close to your eyelids must be hard. It's good to know you had treatment options to choose from. Has the chemo and radiation shown to be effective for you? How are you doing?

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sdrichmond | @sdrichmond | Nov 18, 2023

Hello Everyone,
My name is Scott. I live in north central NC. Diagnosed with angiosarcoma in April 2023. ENT doctors wanted to do immediate surgery. Quite radical surgery because cancer is on my face near eyelids. I opted for chemo first. Completed 5 cycles of chemo now on 7 weeks of radiation (electron). Explored proton but it would have required extended stay from home. It's a journey! Just trying to connect with others and continue learning. Not much historical medical knowledge because of the rare occurrences of angiosarcoma. Very aggressive and can't be taken lightly.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 17, 2023
In reply to @gkristy "Myxoid spindle cell sarcoma removed from my forearm 3/12/23. Radiation for 6 weeks. I go for..." + (show)
@gkristy

Myxoid spindle cell sarcoma removed from my forearm 3/12/23. Radiation for 6 weeks. I go for the review of my 1st 3 month scan next week.
My situation is very lucky compared to others.
And, have my fingers crossed scans will be clear.

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@amybr's husband also had spindle cell sarcoma.

Wishing the best results for your upcoming scan, @gkristy. I hope you'll post your update. First, enjoy the weekend.

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lgshoaf | @lgshoaf | Nov 13, 2023
In reply to @gkristy "Dr Seidel in Scottsdale removed the myxofibrosarcoma from my left forearm 3/1/23. He is considered a..." + (show)
@gkristy

Dr Seidel in Scottsdale removed the myxofibrosarcoma from my left forearm 3/1/23.
He is considered a top sarcoma surgeon.
Please Google him.

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I have it scheduled to remove the tumor at Huntsman in Utah on December 6th. I hate to wait 3 weeks because of my fear it will spread.

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gkristy | @gkristy | Nov 12, 2023
In reply to @lgshoaf "I was just diagnosed with a myxofibrosarcoma on my left arm. Trying to identify the best..." + (show)
@lgshoaf

I was just diagnosed with a myxofibrosarcoma on my left arm. Trying to identify the best surgeon to remove the tumor in the western United States. We live in Boise, Idaho.

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I would try to get into MAYO if you can.
They did not accept my Medicare Advantage Plan

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gkristy | @gkristy | Nov 12, 2023
In reply to @lgshoaf "I was just diagnosed with a myxofibrosarcoma on my left arm. Trying to identify the best..." + (show)
@lgshoaf

I was just diagnosed with a myxofibrosarcoma on my left arm. Trying to identify the best surgeon to remove the tumor in the western United States. We live in Boise, Idaho.

Jump to this post

Dr Seidel in Scottsdale removed the myxofibrosarcoma from my left forearm 3/1/23.
He is considered a top sarcoma surgeon.
Please Google him.

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1 reply
gkristy | @gkristy | Nov 12, 2023

Myxoid spindle cell sarcoma removed from my forearm 3/12/23. Radiation for 6 weeks. I go for the review of my 1st 3 month scan next week.
My situation is very lucky compared to others.
And, have my fingers crossed scans will be clear.

REPLY
1 reply
elcee | @elcee | Nov 12, 2023

I was diagnosed with stage 4 leiomyosarcoma. I had a PET scan done in a mobile unit that is like a large van that moves from city to city in our rural area. It is a fairly routine test that was used to help locate more of the multiple lesions I have.

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