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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.

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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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
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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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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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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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 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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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
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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Dream.catchr | @mickeyambrose49 | Dec 1, 2023
In reply to @colleenyoung "Dream.catchr, how did your appointments go? What did you learn? How are you doing?" + (show)
@colleenyoung

Dream.catchr, how did your appointments go? What did you learn? How are you doing?

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Do you orthopedic surgeon said that it was either a bone infarct or an endochondroma but for now she just wants to watch it. I go back in January for more imaging and to see her again. They also have me set up to go to the cancer center for, my breast cancer follow ups. I was dx’d ILC and as we all know it is a sneaky cancer and often shows up later in other parts of a persons body so I will need follow ups. Mayo didn’t see where City of Hope saw multiple myeloma in my blood but they will monitor my blood as well because there was one thing in my blood that could be indicative of multiple myeloma. I just wait and wait. I almost lost my job on the hormone blockers so I have had to back off on those until I see the cancer center at Mayo in January. For now I’m trying something more natural and praying a lot. Thank you for asking.

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elcee | @elcee | Dec 2, 2023

Has anyone heard of histotripsy being used as a treatment for sarcoma? I have leiomyosarcoma some of which is in my liver. Someone just mentioned histotripsy as an alternative to chemo but they were not real familiar with it either.

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