Diagnosed with sarcoma? Let's share

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?

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

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.

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.

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

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.

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

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?

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.

Hello.....it's best to know what type of sarcoma your Sister has
before attempting any informational research. There are a large number of different types of sarcoma and each have different treatment options. Without knowing more details of your Sister's sarcoma it would be a mistake to take a statement like "no treatments are available" as gospel. There are treatments available depending on a number of factors. If possible, find out some more details of your Sister's sarcoma before you dive into researching "soft tissue sarcoma". Because of the amount of information available from a wide variety of sources, it can quickly become overwhelming. Your journey with your Sister, and helping by gathering information and knowledge of her illness, will be an important part of her cancer care. It seems overwhelming, but knowledge is power. Wishing you and your Family well during this challenging, life altering time. ❤️