Diagnosed with sarcoma? Let's share

Anyone diagnosed with secondary angiosarcoma of the breast?

My neice as diagnosed with synovial sarcoma three years ago. She is now thirty. Did the t cell trial at MD Anderson. Looked like a miracle for a few months, then it was bag. Tumors are around heart and lung. She went back to Israel with her parents over a year ago and has been on low dose chemo, in and out of the hospital every other week. She recently had another T cell trial which apparently failed because my cousin, herbfather wrote me last night that scans show more tumors and others grown. The doctor told him she only has a few months. Anyone have anything we haven't done or thought of.? The doctors last year at MD Anderson told her she only had a few weeks to live, but the low dose chemo in Israel showed that wasn't true. If only AI was faster in changing all this.
Any ideas are greatly appreciated. Thanks

Hi (Not Gu Lol) to all who have responded. Very nice to hear from some people who are 5 year suvivors. Congratulations! Gives more hope than reading the leiomyosarcoma sites! Regardless, I am definitely learning that there are many different types of sarcoma, and even different situations with the subtype leiomyosarcoma so every individual's situation and treatment plan and response will be different. I became aware of mine when I fell during an excercise class and found a very painful lump and pain in my clavicle the next day. After several months of being misdiagnosed and therefore being treated inappropriately I finally found an orthopedic provider who ordered the appropriate testing (CT scan) which found the growth in my clavicle which caused my clavicle to break. After many more tests--mote CTs, MRI, PET, biopsy and some type of genetic blood test I was diagnosed with leiomyosarcoma. Primary site inable to be determined. Leio is a cancer of the smooth muscles and bone. Stage 4 (advanced) None in my lungs, some on liver and a few other muscles in various locations. Not cure able but treatable. Not eligible for surgery and did not want to delay chemo by doing radiation, so I began chemo and have had 2 treatments so far. Hoping to actually shrink it instead of just keeping it from spreading. Time will tell how my body responds.

Hi! Nine years ago I had a spindle-cell sarcoma and my upper right lung lobe removed. Little bugger looked like a cigar butt in the X-ray.
The PET scan had shown two but the surgeon found only the one (luckily it hadn’t moved to the lymph nodes so no radiation or chemo.
My six-moth CT scan showed a growing node in my upper left lobe so I have another CT scan next week. Sigh. If it’s another sarcoma it’ll be same song, second verse as to treatment, I imagine.
My oncologist says these are very rare (no autographs, please) and that they usually reoccur within a year. My pulmonologist isn’t worried so I’m looking on the bright side.
I’m still here and feeling fine. Whatever it is my doctors and I will deal with it. I’m blessed I have had a fairly easy time of it compared to the warriors I see in my oncologist’s office!

Would you mind sharing what leiomyosarcoma is? Is it in the bone? How did you know you had it. What were your symptoms. The possible chondrosarcoma(still need biopsy to confirm) I have in my femur is large 10cm x 2.2cm and was only accidentally found on a bone scan because my oncologist wanted to show me the breast cancer I have did not spread so she ordered a bone scan. I understand a chondrosarcoma is generally not breast cancer that has spread and I am thankful for that and really thankful that I kept bugging my doctor with the fact that I just did not feel well. I’m curious if you physically felt sick before being diagnosed.

I would love to hear more about you and your husband’s journey. I had no idea that there even was such a thing. I can’t imagine what it must feel like to have it in your skull.

My husband has had a chondrosacroma of the skull twice . It has been a very very long difficult road . It is so rare. Would you like to connect?

Hello,
I was diagnosed with leiomyosarcoma in 2018 and only discovered this site yesterday! But this path has taught me that everything happens in perfect timing, so… It looks like we’re “walking buddies.” 😊

Nice to connect with you. I’m interested in chatting, too.

Gu,

I am recently diagnosed with Leiomyosarcoma. I am interested in chatting with others who are walking this walk.

Here, I just want to help my brother-in-law. My brother-in-law has been diagnosed with High-grade sarcoma or leiomyosarcoma.

Here are the details:
Diagnosis: The biopsy from a retroperitoneal mass is identified as High-grade sarcoma or leiomyosarcoma.

Supporting Information:
History: The patient presented with a large mass in the right retroperitoneal area. This mass has spread extensively to the liver and lungs. There's a clinical suspicion that this mass is a sarcoma. The CT scan indicates the features of a retroperitoneal sarcoma that has infiltrated nearby organs including the right kidney, right ureter, IVC, and abdominal aorta. Additionally, the CT scan shows that the cancer has metastasized extensively to the liver and lungs.

Nature of the Specimen: The biopsy of the retroperitoneal mass was obtained with the help of ultrasound guidance.

Gross Features: The biopsy includes multiple strips of tissue that range in size from 3mm to 15mm. These strips were all placed in one block.

Microscopic Details: The biopsy displays malignant cells that are spindle-shaped. These cells have a variety of features such as nuclear changes, the arrangement of cells, the presence of tumor necrosis, and more. The cells are particularly notable for their aggressive appearance and activity.

Immunohistochemistry: This is a test that uses antibodies to determine the type of cells present in the biopsy. In this report, the malignant cells tested positive for certain markers like smooth muscle actin, desmin, and caldesmon. Some cells were weakly positive for CD34. The malignant cells did not test positive for MDM2, S100, stat-6, and myogenin.

Does anyone have a similar story? If so, how are you doing now, and could you share your story and treatment methods? Thank you.