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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.

Terriebikes | @bicycle3 | Nov 27, 2022

Anyone else getting doxil chemo?
5 days of radiation?
other successful treatments?

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Terriebikes | @bicycle3 | Nov 27, 2022

my friend reminds me to keep up the pace but to set the timer to remember to take couch breaks

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Terriebikes | @bicycle3 | Nov 27, 2022
In reply to @stephanie27 "I'm so fortunate to have a lot of energy, but it is hard. I work full..." + (show)
@stephanie27

I'm so fortunate to have a lot of energy, but it is hard. I work full time, am an only child with zero family around here. Two of my children are in college, so I only have one at home in high school. They are taking it pretty well, I guess. We have had a lot of tragedy, so quite frankly, we handle things like champs. My dad passed away 5 years ago from Flu B. My mom always helped with the children, so I've had to learn alternate ways to get my son home from school, etc... I certainly do not like these kinds of surprises any more. And 2 different kinds of rare cancer..????? I'd rather hit the money lottery than this one. Here is a pic of my youngest son (he was just in the musical Cinderella) and my daughter (she goes to Ball State) and me (first grade teacher).

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treatment plans?

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stephanie27 | @stephanie27 | Nov 26, 2022

I'm so fortunate to have a lot of energy, but it is hard. I work full time, am an only child with zero family around here. Two of my children are in college, so I only have one at home in high school. They are taking it pretty well, I guess. We have had a lot of tragedy, so quite frankly, we handle things like champs. My dad passed away 5 years ago from Flu B. My mom always helped with the children, so I've had to learn alternate ways to get my son home from school, etc... I certainly do not like these kinds of surprises any more. And 2 different kinds of rare cancer..????? I'd rather hit the money lottery than this one. Here is a pic of my youngest son (he was just in the musical Cinderella) and my daughter (she goes to Ball State) and me (first grade teacher).
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mar4 | @mar4 | Nov 25, 2022
In reply to @colleenyoung "@mar4, what did you learn from your appointment with your doctor today? Do they think it..." + (show)
@colleenyoung

@mar4, what did you learn from your appointment with your doctor today? Do they think it might be a new sarcoma forming? Any tests ordered?

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@mar4.

My PC doctor examined the area and does not think it is a Sarcoma. However, she wants me to have some X-rays of the area and go from there.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022
In reply to @stephanie27 "My mom has been diagnosed with leiomyosarcoma. She has had one surgery to remove a tumor,..." + (show)
@stephanie27

My mom has been diagnosed with leiomyosarcoma. She has had one surgery to remove a tumor, her spleen, part of her pancreas, part of her stomach, her adrenal gland. She is currently in rehab waiting for our next steps. This is a scary process for sure. My husband passed away from a rare form of gallbladder cancer almost 13 years ago when my children were 8, 6, and 2. We were 35. I do not wish to do this again.

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Oh @stephanie27, this must be bringing difficult memories flooding back. You may be interested in joining this discussion:
- Leiomyosarcoma: What can I expect now? https://connect.mayoclinic.org/discussion/leiomyosarcoma-1/

How are you children dealing with this? How are YOU doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022
In reply to @mar4 "@mar4 I believe I have the soft tissue kind. Had it in my left breast. Had..." + (show)
@mar4

@mar4

I believe I have the soft tissue kind. Had it in my left breast. Had that removed along with 4 ribs it spread to. Now I have a new site just beginning not far from first site. I’m seeing my PC today for advice

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@mar4, what did you learn from your appointment with your doctor today? Do they think it might be a new sarcoma forming? Any tests ordered?

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1 reply
stephanie27 | @stephanie27 | Nov 25, 2022

My mom has been diagnosed with leiomyosarcoma. She has had one surgery to remove a tumor, her spleen, part of her pancreas, part of her stomach, her adrenal gland. She is currently in rehab waiting for our next steps. This is a scary process for sure. My husband passed away from a rare form of gallbladder cancer almost 13 years ago when my children were 8, 6, and 2. We were 35. I do not wish to do this again.

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mar4 | @mar4 | Nov 25, 2022

@mar4

My name is Marcy. I am a 79 year old widow. Started my first Sarcoma in 2021. Year later had second one (Oct 2022). Now starting again.

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mar4 | @mar4 | Nov 25, 2022

@mar4

I believe I have the soft tissue kind. Had it in my left breast. Had that removed along with 4 ribs it spread to. Now I have a new site just beginning not far from first site. I’m seeing my PC today for advice

REPLY
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