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.

jeshaw6801 | @jeshaw6801 | Jun 26 9:39am

Run to the closest Sarcoma center to get it evaluated by a sarcoma doctor.
The first step is a good diagnosis
The type and location is critical to finding a plan forward.
The absolute best solution is surgery to remove the cancer but that is complicated by location.

Colleen Young, Connect Director | @colleenyoung | Jul 2 9:44pm

In reply to @cynthia58 "Malignant sarcoma in my left hand between my 4th and 5th fingers grade 2" + (show)

Hi @cynthia58, is this a new diagnosis for you? I bet you have a lot of questions. How are you doing? What treatment is being suggested?

Sarah | @smcc | Jul 3 6:52am

Hi,

How are you? I have a rather large sarcoma high up on my inner thigh. I have had an ultrasound and and Mri and im still waiting for a biopsy, 4 weeks now. I am in limbo and really dont know what to expect. Any knowledge would be helpful

barndad59 | @barndad59 | Jul 3 9:31am

Hi,
There are over 150 types of sarcomas, let pray its not malignant, else it will need to be removed with margin.
A biopsy could be done with a twilight drug, I have had a few biopsies. The one thing I can say radiation did not make a difference other than to change the DNA of the cells in the area, making my type of sarcoma worse.
I talked to two different NYC medical and they both say the same no known drug that they can say will kill it, stop the spread or growth. First is surgery to remove it.

jeshaw6801 | @jeshaw6801 | Jul 3 9:50am

Did you go to Sloan Kettering. They are the best sarcoma hospital in ny

haunk57 | @haunk57 | Jul 3 1:01pm

I have Leiomyosarcoma. Started in my uterus & I had a hysterectomy in March 2024, first CAT scan in September 2024 was clear and 2nd CAT scan in May 2025 showed a tumor on my liver and tumors in my lungs. I have seen a Sarcoma specialist, Dr Samantha Armstrong at IU health in Indy. I need to get a whole body PET scan and then she's gonna start me on chemo: Doxorubicin & Dacorbazine.

kathyaz | @kathyaz | Jul 3 3:54pm

Hello all. I’m a member since Jan 2025. Been reading, but haven’t posted. Diagnosed with uLMS after total hysterectomy 12/31/24. Clear margins, stage 1b, high grade. Open surgery with Gyn Onc; now seeing sarcoma specialist at Mayo Clinic Phoenix. Scans have been clean so far, with next round this month. After absorbing so much info from others’ experience, I’ve learned it pays to stay informed, ask questions, and have a doctor you have faith in. We all will face different challenges. I already completed my first goal of attending my granddaughter’s wedding in Kentucky in June. She is a 16 yr cancer survivor. Thanks to all for sharing.

mcwjr189 | @mcwjr189 | Jul 4 8:38am

In reply to @ctflyr "Hello.....it's best to know what type of sarcoma your Sister has before attempting any informational research...." + (show)

Hello, I was diagnosed with a malignant solitary fibrous tumor in my liver which was surgically removed in 2021. It later metastasized to my lungs. I was treated in Cancun with dendritic cell therapy in January of 2025 and hand no new tumors since. They are getting amazing results with sarcomas. Visit Immunocine.com for more information. MCWjr189

daysiperu | @daysiperu | Jul 4 5:30pm

Hola, mi hermanito tiene 19 años, tiene sarcoma epitelioide, me dicen que no hay tratamiento y si hay es solo en EEUU, y es súper caro, alguien con ese diagnóstico?

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barndad59 | @barndad59 | Jul 7 10:35am

In reply to @jeshaw6801 "Did you go to Sloan Kettering. They are the best sarcoma hospital in ny" + (show)

Yes, I am at Sloan, but the only thing they can do with my sarcomas is cut. I asked them to try to save the leg with a flap and when it reoccurred did cryoablasion twice.
They do have the pathology department, but wish the oncologist would give me some hope it is on the Web databases and discussed at conferences in case someone else has a treatment plan.
I am in limbo waiting for the next occurrence, and surgery.