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.

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.

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.

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

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2022

In reply to @mar4 "I had a Sarcoma removed. 8 months later I had another removed. Recently I’m starting with..." + (show)

@mar4, this must be worrisome to feeling another sarcoma forming after already having had 2 surgeries to remove 2 sarcomas. What type of sarcoma do you have?

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2022

In reply to @citygirl55 "Has anyone had epithelioid sarcoma cancer" + (show)

Welcome @citygirl55. I moved your message to the main sarcoma discussion group here:
- Diagnosed with Sarcoma? Let's Share https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/

I did this so you can connect easily with others with soft tissue sarcoma like @marymaurer @kristennursepatient @saemlerpe @vivianfromaz @ventibug @me67 and others.

Citygirl, as you likely already know, epithelioid sarcoma is a rare, slow-growing type of soft tissue cancer. Most cases begin in the soft tissue under the skin of a finger, hand, forearm, lower leg or foot, though it can start in other areas of the body. Where was your sarcoma discovered? Have you started treatment?

mar4 | @mar4 | Nov 23, 2022

In reply to @citygirl55 "Has anyone had epithelioid sarcoma cancer" + (show)

I had a Sarcoma removed. 8 months later I had another removed. Recently I’m starting with what I believe is a new one forming 3 months after last one. Never required chemo. Anyone else get chronic cases. If so, what do you do for it, aside from surgery.