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 | 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.

citygirl55 | @citygirl55 | Nov 22, 2022

Has anyone had epithelioid sarcoma cancer

Terriebikes | @bicycle3 | Nov 20, 2022

In reply to @clopez7591 "Hello I have a family member diagnosed with liposarcoma stage 4. It is devastating to the..." + (show)

Encourage activity.

Terriebikes | @bicycle3 | Nov 20, 2022

In reply to @clopez7591 "Hello I have a family member diagnosed with liposarcoma stage 4. It is devastating to the..." + (show)

Listen. Help the person get organized.
Listen to their requests .
Affection.

clopez7591 | @clopez7591 | Nov 19, 2022

Hello I have a family member diagnosed with liposarcoma stage 4. It is devastating to the family and I want to know how I can help?

Terriebikes | @bicycle3 | Nov 19, 2022

Blessings
The one on my hip has calcified.
We are treating others on lungs now.
I am a bit nauseated this week after Doxil chemo last Friday.

mary64300 | @mary64300 | Nov 18, 2022

I was diagnosed with a sarcoma. I do not know exactly what kind. The pathology report after my hysterectomy says poorly differentiated central type PNET with mainly neuroblastoma features.
I am waiting to get an appointment with a sarcoma specialist. Chemotherapy to start when I am healed from surgery. 🙂