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.

todr | @todr | Jan 9 5:46pm

In reply to @colleenyoung "Hi @todr, welcome. You might wish to join the members in this related discussion: - Malignant..." + (show)

Can you please let me know how to join that group??

Thank You

janezum | @janezum | Jan 9 9:27pm

In reply to @colleenyoung "Hi @janezum, I think @danielad may have some experience to share with you. Her grandson also..." + (show)

Hi, Phoebe is currently completing treatment 2 of ifos and etop having found additional tumours in her lung and clavicle. She was treated in 2023 with MAP for tumour in knee and lung. She's amazingly strong.

bardona | @bardona | Jan 10 8:42am

I developed angiosarcoma in 2023 after I
had a left breast lumpectomy in 2019 for lobular breast cancer and then 15 radiation treatments.
The angiosarcoma was the rare side effect of radiation and I had to have a mastectomy .

Colleen Young, Connect Director | @colleenyoung | Jan 11 8:45pm

In reply to @todr "Can you please let me know how to join that group?? Thank You" + (show)

Hi @todr
Click this link https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/ and then post a message sharing your story to the members talking about Malignant Peripheral Nerve Sheath Tumor

janezum | @janezum | Jan 14 8:14am

In reply to @nanee1 "I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to..." + (show)

It sure does dear soul, and THANK U for taking time out to reply. GOOOO GOOOO GOOOO Chemo CARLxxxxxxx

nanee1 | @nanee1 | Jan 24 9:22am

In reply to @janezum "It sure does dear soul, and THANK U for taking time out to reply. GOOOO GOOOO..." + (show)

I will send a picture of Chemo Carl. He will be happy to help your loved one. I will do it in the next few days.
How are things going there?

sjd4901 | @sjd4901 | Jan 31 7:37pm

I’ve been diagnosed with Leiomyosarcoma of the prostate. Haven’t been able to connect with anyone else with the same diagnosis.

casgarcia | @casgarcia | Feb 1 9:12am

My 44 year old son was diagnosed with leiomyosarcoma abd early onset Parkinsonism in October 2022. He had surgery and radiation but as of January 2024 a new tumor resurfaced in his right axilla. He just started chemotherapy this week. We are in Merida, Yucatan, Mexico. The medical care is excellent.

casgarcia | @casgarcia | Feb 1 9:15am

In reply to @nanee1 "I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to..." + (show)

That's great news. Our oncologist tells us that the incidence of leiomyosarcoma is 1 to 3 per million but the good news is that this type of cancer is very susceptible to chemotherapy.

casgarcia | @casgarcia | Feb 1 9:24am

In reply to @nanee1 "I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to..." + (show)

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.