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.

mulkey518 | @mulkey518 | Dec 3, 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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Hello Scott - this is Mulkey. I too was diagnosed with Radiation Induced Angiosarcoma of hte blood vessels in April 2023 as a result from receiving 6 weeks of radiation treatment from my 2014 Breast Cancer. The Surgeon said that the Angiosarcoma is a delayed effect of the radiation. I could not find any one who knew about this rare cancer. Also, I live in the DC metropolitan area and not many doctors have had experience with Angiosarcoma (soft tissue sarcoma). I was told by one Medical Oncologist that there are no studies or clinical trials for Angiosarcoma. I am scheduled to see the Medical Oncologist to go over the plan for Chemo but that is not scheduled until December 15th. He stated that he will be giving me generic meds for four (4) cycles running for 3 - 4 months.- but as of now, I don't know the name of the meds or anything else. I am trying desperately to find a doctor to get a second opinion. So I will include you Scott in my Prayers as well. We got to stay connected here,

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 4, 2023
In reply to @mimih "Just diagnosed with sarcoma in chest area" + (show)
@mimih

Just diagnosed with sarcoma in chest area

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@mimih, welcome. I second @everythinglucky's questions. What treatment has been suggested? How are you doing?

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verena | @verena | Dec 11, 2023

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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2 replies
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)
@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.

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

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1 reply
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)
@elcee

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

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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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2 replies
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)
@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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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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1 reply
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)
@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
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)
@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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1 reply
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)
@liv38556

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.

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1 reply
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)
@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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