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.

dlionhardt | @dlionhardt | Jul 16 9:34am

Good morning, everyone, it has been one month since my surgery for the GIST that was discovered on a routine endoscopy. I have posted before but have been so busy with recovery that I have not given an update in a while. The surgery was successful, Dr. Abbate used the Da Vinci robot to assist him with the surgery, and a great team of other nurses and doctors. The tumor was removed with zero margins, and the growth rate was negligible. Dr Abbate has me on surveillance for five years, with a CT every six months. He only had to do a partial gastrectomy, so my diet will not have to change. I did do two weeks of liquid diet, and then two weeks of soft, and now I am back to whatever I can tolerate.

I feel so blessed on all aspects of this experience, so many things were in my favor, I give all glory to God for that. I want to say I am praying for everyone who has to go through any battle with cancer, that they will have comfort, strength, and resilience all through their fight. I know everyone doesn't have miraculous results, but be of good cheer, God is with you in everything you go through, He loves us all.

jeshaw6801 | @jeshaw6801 | Jul 7 1:20pm

I am so sorry for your situation. You are at with an outstanding organization. Sarcoma is frustrating since it responds to very few chemos and radiations and is so aggressive upon its reoccurrences. and all we can do is wait to see what is successful. I am waiting as well to see if this miserable chemo is effective at extending my life. Cycle 4 day 6.

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.

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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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

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.

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.

jeshaw6801 | @jeshaw6801 | Jul 3 9:50am

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

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.

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