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.

Colleen Young, Connect Director | @colleenyoung | Dec 4, 2023

In reply to @mimih "Just diagnosed with sarcoma in chest area" + (show)

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

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.

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)

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

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)

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.

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)

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.

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)

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

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)

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

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)

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.

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)

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

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)

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....