r/sarcoma

I'm a sarcoma patient. I found a lump while on active duty, and the hardest part wasn't the diagnosis — it was how long it took to get in front of someone who had actually seen my kind of cancer before. I'm trying to understand why that happens to so many of us.
If you're willing to share, I'd love to hear:

How long between first noticing something and seeing a sarcoma specialist?

What happened in between — who did you see, what were you told, was anything removed before anyone knew what it was?

What finally got you to the right place?
What do you wish someone had told you at the start?

No wrong answers and no need to share anything you'd rather not. I'm just a patient trying to make sense of this for the people who come after us. Thank you.

2 weeks ago my oldest son was diagnosed with tumours after this CTScan. It was a shock and about a week ago he had to have emergency surgery of his spine to remove the parts of a tumour that was pressing against his spine.

Biopsy is made and we are waiting for answers. Is there anyone here that might suspect what kind of sarcoma it might be? I’ve tried to figure out which direction to look but doctors so far says it’s an usual way that the spread and pictures look and cannot or won’t say anything yet.
We’re in Sweden btw.

”A CT scan of the thorax and abdomen shows a relatively large tumor in the region of the left scapula; it is growing into and destroying the scapular blade while infiltrating adjacent musculature. Furthermore, as previously described, there is tumor involvement in the thoracic spine—affecting both the vertebrae and the intraspinal space, where the tumor is causing severe spinal cord compression—as well as tumor growth in the paraspinal musculature. Taken together, the imaging findings suggest a primary tumor in the scapular region with metastasis to the spine. While the tumor could be further characterized via MRI, the findings primarily point to a primary sarcoma, and an urgent consultation with the sarcoma team is recommended. A primary tumor in the spine with metastasis to the scapula is also a possibility, though this would likely involve a high-grade malignant peripheral nerve sheath tumor. Ultrasound-guided biopsies of both the paraspinal musculature and the scapular region are likely feasible, but these should be performed by or upon the recommendation of the sarcoma team. Multiple diffusely scattered nodules are observed in the lung parenchyma, raising suspicion of early-stage metastatic disease. Additionally, there are several enlarged lymph nodes in the mediastinum and bilateral hila, suggesting nodal metastasis. Indeterminate lesions are noted in the spleen and pancreas; metastatic disease cannot be entirely ruled out, particularly in the spleen. An abdominal MRI might provide further information. A 6 mm subchondral lytic lesion in the right femoral head may be degenerative in nature and/or a cyst, but given the overall clinical picture, metastasis cannot be entirely excluded. No other skeletal lesions suspicious for metastasis are observed.”

Hello all.

I never imagined id be apart or this sub..but my dad was just diagnosed with a low fibromyxoid sarcoma. We just found out via biopsy. Hes had it for many years and unfortunately ignored it until it became a problem. It is pretty large..6 inches to be exact. But the semi good news is that it is not spreading.

I guess im just looking for other people's stories from those who have also been diagnosed with it or a family member who has been. Its really shocking news to hear.

I tried to read up some about it, but i dont even know what to think.

My brother-in-law was diagnosed with synovial sarcoma last year, and our family has been going through an extremely difficult time since then.

Initially, his biopsy didn't show signs of sarcoma. He later had surgery in the inguinal area, but further testing showed that it was actually synovial sarcoma.

He then had a PET scan and started 6 cycles of chemotherapy. During the 5th and 6th cycles, the chemotherapy dose had to be reduced because of a shortage of the medication at the time. Initially, the tumor around the inguinal area responded very well and shrank significantly.

Unfortunately, after the next PET scan, the cancer was still present and appeared more active. They then tried 10 rounds of radiation, but unfortunately it didn't seem to help much.

The doctors have now recommended pazopanib (Votrient), 400 mg per day, mainly to control the disease because it has unfortunately spread to his lungs as well.

Right now, he's struggling quite a lot. He has a persistent cough and significant pain that moves around his body — sometimes his shoulders, sometimes his hips, and sometimes other joints. The pain can be very intense. For the past few days, he's also been having what seems like constipation since starting pazopanib.

We're obviously terrified and don't know what to expect.

For anyone here who has personally dealt with advanced/metastatic synovial sarcoma, especially when it has spread to the lungs:

- Has anyone had a similar situation and responded well to pazopanib?

- How long were you able to stay on pazopanib, and did it actually control the cancer?

- Did anyone experience significant coughing, joint/body pain, or constipation while taking it?

- Are there people who have lived for many years with metastatic synovial sarcoma?

- What other treatments or clinical trials were offered after pazopanib?

- Is there anything you wish you had known earlier in the treatment journey?

I'm not looking for someone to predict his lifespan. I would really just like to hear from people who have actually been through something similar — what worked, what didn't, and how you dealt with it emotionally and practically.

Any experiences or advice would mean a lot to our family.

Hi friends 🫂 last month I (23F) had surgery to remove a tumor, which we thought was a cyst, on my inner right thigh, which was 3x3 cm. The dermatologist sent it to a lab, and the pathology report came back that it’s a type of soft tissue sarcoma called Dermatofibrosarcoma protuberans- also known as DFSP. It’s a super rare form of sarcoma that develops in only 1 in a million people.

I’m having another surgery (tumor bed re-excision/wide excision) to remove the remaining cancer, but I’m worried about the healing timeline. I haven’t seen many people who have had a tumor removed from their inner thigh, or what that healing process will look like.

My first surgery left me with an open wound on my leg for 7 weeks because the stitches never closed in the area, as well as sending me to the hospital twice because of severe infection pain, apparently because it’s a super hard/awkward area to heal. Most of the tumor was located in my subcutaneous fat, so it’s pretty deep in there, as well as a lot of scar tissue that will be removed as well. The current scar is about 1x2”, but now I don’t even know how big the next one will be.

TLDR: how do you take care of a tumor removal from your inner thigh??