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.

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?

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

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

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 .

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.

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

Colleen Young, Connect Director | @colleenyoung | Jan 9 4:51pm

In reply to @todr "MPNST. Tumor removed from mediastinum and completed 32 radiation treatments. Now waiting for scans scheduled for..." + (show)

Hi @todr, welcome. You might wish to join the members in this related discussion:
- Malignant Peripheral Nerve Sheath Tumor
https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

Colleen Young, Connect Director | @colleenyoung | Jan 9 4:49pm

In reply to @janezum "Good morning and warm wishes to all on this site. My 15yr old God-daughter has been..." + (show)

Hi @janezum, I think @danielad may have some experience to share with you. Her grandson also had a diagnosis of osteosarcoma.

@nanee1, I love that you designed Chemo Carl. I wonder if you would mind posting a picture of him. I bet it would inspire Jane's God-daughter.

Jane, how is your God-daughter doing? What treatments will she have?

newsha | @newsha | Jan 9 9:34am

Hi Everyone! I'm 40 years old and was diagnosed with Clear Cell Sarcoma in November. I started radiation last friday and so far it's going well, totally painless and easy (hoping I still feel this way at day 25 lol). Mine is in my hand. I will have to have surgery in March to remove my tendons, then another surgery to reconstruct them, I'll also have a skin graft. I'm definitely nervous about the surgeries, hoping I will have normal function of my hand after. But honestly I don't even care that much, I just want to LIVE! I'll also need a biopsy done in the lymph node in my under arm to make sure it hasn't spread. I was told this type of cancer spreads to your lungs, so I'll also have a CT scan of my lungs as well. I'm doing my best to continue with life as normal as possible for now. Sending everyone here lots of love. Stay strong!

verena | @verena | Jan 9 9:26am

I am finally starting radiation therapy for my upper thigh Myxosacroma this week! It seems to have taken forever to set up. I feel I have some grasp on relevant information of what to expect but if folks have something they want to share some wisdoms, that would be great. Or just send good vibes the RT will work well. Thanks.