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.

shukktse | @shukktse | Dec 22, 2025

In reply to @colleenyoung "@shukktse, how you been to see your doctor to investigate the cause of the lump on..." + (show)

@colleenyoung
My primary doctor told me to take an ultrasound and a MRI. I already took the ultrasound. Now, I am just waiting to take the MRI on 12/30

Colleen Young, Connect Director | @colleenyoung | Jan 5 12:23pm

In reply to @shukktse "@colleenyoung My primary doctor told me to take an ultrasound and a MRI. I already took..." + (show)

@shukktse, how did it go? Next steps?

shukktse | @shukktse | Jan 13 11:03am

MRI reports said that my lump is most likly ganglion cyst.

chuckeg | @chuckeg | Jan 15 10:22pm

In reply to @mcwjr189 "@kjm70 I would recommend Immunocine.com. They are working with dendritic cell therapy and have had amazing..." + (show)

@mcwjr189 I am in between surgery and potentially chemo. My diagnosis was last January. Radiation, like yours was 25 sessions. Surgery was in June. I had a "bactsrecium" in May (30 days treatment) before surgery. About to have a discussion with an oncologist concerning chemo treatment, as metastices have shown up in my lungs already. Would Immunocine worthy of exploring this late?

kenroy | @kenroy | Jan 15 11:30pm

In reply to @shukktse "@colleenyoung My primary doctor told me to take an ultrasound and a MRI. I already took..." + (show)

I had fibro sarcoma sep 22 2025 one year in remission I do an mri every three months and I dread them hopefully it the only one you have to do wish you well

mcwjr189 | @mcwjr189 | Jan 16 5:44am

In reply to @chuckeg "@mcwjr189 I am in between surgery and potentially chemo. My diagnosis was last January. Radiation, like..." + (show)

@chuckeg ,
They certainly have a hotline number to call and normally answer within a day. Check it out ast Immunocine.com

kenc | @kenc | Jan 17 4:51pm

In reply to @shukktse "MRI reports said that my lump is most likly ganglion cyst." + (show)

@shukktse Perhaps seek a high resolution CT Scan. For months doctors diagnosed the lump on my thigh as hematoma. However, after the high resolution scan and the biopsy that followed, the rather large lump was diagnosed as Sarcoma cancer.

kenc | @kenc | Jan 17 4:53pm

In reply to @chuckeg "@mcwjr189 I am in between surgery and potentially chemo. My diagnosis was last January. Radiation, like..." + (show)

@chuckeg Would explore all options with the oncologist. There have been positive results with immunotherapy along with chemo therapy and the other treatments that are available.

ctflyr | @ctflyr | Jan 18 8:26am

In reply to @chuckeg "@mcwjr189 I am in between surgery and potentially chemo. My diagnosis was last January. Radiation, like..." + (show)

@chuckeg
If you're able to travel and have available cash, Immunocine may be an option. They are located in Cancun Mexico, and require cash payment. Insurance and/or Medicare won't cover their treatments, and they are selective about patients they accept.

om619 | @om619 | Jan 23 11:30pm

Greetings!
The gist of my diagnosis is that I have GIST. I find that hilarious. After five months of it being a mystery, we finally have a name for it.
I live in So Cal. I'm a massage therapist and on a good day, I do guided meditations. I just got the GIST on 1/22/26. I'm not quite sure how this all going to work out, but I'm sure my meditation skills and my acupuncturist are going to be an integral part of it.

Living in Cali, you can't help but be exposed to alternative and integrative medicine. My first parasite cleanse was wild.

I'm here trying to find my people, discuss the books, therapies, and try and keep my wits about it. Oh, and I'll probably be doing guided meditations.