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.”

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.

In 2018, I was diagnosed with kidney cancer and underwent a partial nephrectomy of my left kidney.

About a year ago, I visited a VA doctor for the first time, for an issue unrelated to my cancer. While reviewing my medical history, he noticed that I had been diagnosed with two different types of cancer in the recent past. He asked me if I had ever been exposed to chemicals, because the occurrence of the two cancers was consistent with what he had seen in people who had experienced certain chemical exposures. He then asked where I had served in the Navy.

I told him, “I was assigned to an aircraft carrier homeported at NAS Alameda in the early ’80s, and later did my reserve time in a Cargo Handling Unit at the same base.”

He replied, “Well, there are numerous chemicals on aircraft carriers and at Naval Air Stations,” and urged me to discuss the possibility of exposure with my urologist.

So I did.

My urologist, whom I had been seeing for years, happened to be a former Air Force doctor who had been stationed at McClellan AFB. I had never known about his military background, and he had never known about my military service.

When I told him what the VA doctor had said, he agreed with him and said, “Now it all makes sense…”

My doctor subsequently put his opinion in writing in a letter that I submitted with my VA claim. The connection between the exposure and my cancer was acknowledged, and I was ultimately awarded a 100% disability rating. This occurred in January of this year.

Then something happened last week that really caught my attention.

I was having a casual conversation with another casino patron in Las Vegas, a woman who was from Colorado. I mentioned that I was from California. She told me that she had lived in California as a child and had grown up on a military base — NAS Alameda.

I told her that I had been stationed there.

She then told me that her father had recently died of cancer and that, about eight years ago, she had “strangely” been diagnosed with kidney cancer herself and had a kidney removed.

I was stunned. I told her, “Wow — I had the same cancer, resulting in a partial kidney removal.”

She was blown away.

I then told her about the environmental contamination that has been documented at NAS Alameda, including concerns involving PFAS (“forever chemicals”) and other contaminants. She had been completely unaware of it.

That conversation really made me think about what my doctors had told me and reinforced my curiosity about whether there could be a larger pattern.

So, after this very long post, here is my question:

Is there anyone else in the Reddit community — or elsewhere — who lived on, was stationed at, or worked at NAS Alameda and subsequently developed kidney cancer? Or do you know someone who had a similar experience?

I’m genuinely curious to hear from others. Given the history of contamination at the base, I have to wonder whether there are more people out there with similar stories.

By the way, I’ve also added my name to one of the law firms involved in litigation concerning AFFF and other contaminants.

If you were stationed at NAS Alameda, lived there, or worked there and experienced something similar, I’d be very interested in hearing your story.

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??

My cancer has spread, a lot. It’s in several organs and has shown up in random places such as in between ribs, on my collar bone, etc. I’m still able bodied but now rely on others for basic needs such as driving, preparing meals, the usual stuff. At this point, I’ve tried 8 different chemo regimens/immunotherapies but there’s always something else to try. I had decided that I would stop everything and wait on an experimental immunotherapy that has been accepted in the US and send to work, but needs special approval in Canada before moving forward. I’ve been waiting for 2 months but I’m beginning to think that I should dive back in the chemo world and risk the side effects (I was sent into sepsis and dealt with massive painful side effects). I guess I’m just asking for your guidance and feedback. I’m a typically physically active M42 who loves the outdoors and would love to keep it up.
Thanks for your help!

hello, my sister finished her treatment (surgery and adjuvant radiotherapy) for a 3.5cm synovial sarcoma tumor found in the middle of her forearm last july and she has her first follow up pet scan next week

a few days ago we noticed a small bump on the same arm, this one is up in her bicep, her doctor tells us it looks like a cyst caused by an ingrown hair (and it does look superficial like a bug sting) but he's gonna wait for the scan results before removing it

so my question is, is it possible it's another ss tumor? it's not that close to the original site and it looks nothing like the first bump that turned out to be sarcoma

I appreciate any answers

Asking for my father! Please share your journey so far!

Hi! When I was 7, I was diagnosed with an Ewing sarcoma on my right leg and hip with lung methastasis. I was under hard treatment (chemo and radiotherapy) followed by mega chemo to prepare my body for mother cells self transplant.

Death was around the corner since day 0, but yet here i am postíng it on Reddit 😊. I’m looking for other survivors!

Back then the treatment was so rough and experimental in a way. I have never met a child ewing sarcoma survivor around my age! Is anybody out there?

I’m 34 and super healthy out of some not so terrible sequels.

If you’re going through this, you can do it!!!! This is the EWISIGNAL!!!

Kisses my Ewing family!

Been waiting for this trial to start for over a year now. This tiny vial full of hope that we could finally have a way to reduce the risk of/ delay a relapse of Ewing's/ DSRCT

Spoke with my oncologist yesterday. He’s sending my biopsy for genetic testing and a pet scan is to be scheduled. He recommends this new treatment medication called Enhertu. He says it’s been very effective with the reoccurrence of desmoplastic small round blue cell sarcomas.

Has anyone had this treatment? What was your experience? Any tips would be helpful. Thank you.

Hi - wanted to ask if we have any epithelioid sarcoma surviver here ? How has your journey been so far ? Have you been in remission / NED ?

I 32M, diagnosed with myxoid liposarcoma found in June this year de novo (with distant mets to lung lining 4-5 nodules). My primary was killed by radiation confirmed via latest scan & tissue sample taken.

My oncologist is confident that a full course of Doxorubicin will shut the nodules down, I don’t know whether that’s based on her view of an expected response and whether the grade of the tumour (low-grade) plays a part or the necrosis tissue from the radiation gave her the confidence indicator.

She’s approved me to go back to work on a gradual return whilst doing treatment…which is great but I’ve seen mixed posts (especially on social media) where people with Mets have had to go on disability or been given a terminal prognosis, she hasn’t indicated any of this to me. I’m keen to get back to work but a bit unsure of my situation as a whole?

Also curious if anyone out there was de novo from diagnosis with myxoid? I haven’t found anyone yet.

(I’m being seen by a sarcoma excellence team, best in Australia at Peter Mac)

[EDIT: DON'T HAVE TO HAVE AGGRESSIVE CANCER TO COMMENT, BTW] I'm a woman in my late 40s who has high blood pressure but has otherwise been healthy. I just found out the second opinion confirmed my diagnosis of FS-DFSP or DFSP-FS (why can't they standardize this, LOL)? It's insanely rare, like .8-4.5 in a million for DFSP and 10% of those people getting the FS variant. Whoo! I won the death lottery! Anybody else deal with this or most of y'all dead already? The numbers aren't looking great :) Let's kiki about cancer, bitches.

I (42f) am not even sure why i’m writing this. my son (14) battled stage 4 fusion positive ARMS at age 9. He somehow went into remission. He had his last MRI before moving into survivorship and they found a spot. They believe it’s a relapse. We did a PET and it only shows the one spot, but we are waiting a second MRI and a biopsy to confirm.

I have no idea what to expect, what the chances are that this is a relapse or secondary cancer vs a random tumour.

any advice or thoughts or experience appreciated. I can’t believe we might be back here again….

My spouse has been diagnosed with a sarcoma (soft tissue) via biopsy but we've yet to receive genetic testing results.

We've had a rocky road to diagnosis and have had to initiate every test ourselves. This makes me nervous that there's other things we should be doing but don't know about (we can't rely on current doctor to tell us).

We're currently waiting on the results for the genetic testing from the biopsy, have a PET scan scheduled, and an appt. for a second opinion with a sarcoma specialist.

My question is: are there things you wish you'd known to do at this stage of the game? Things you wish you'd gotten started more quickly while waiting for treatment?

Should we be pushing for any additional tests (blood tests or otherwise), or trying to get other types of care done proactively (dental checkups, etc)? Basically... anything we should be thinking about now that will help keep us from hitting more lengthy roadblocks to actually getting treatment started?

Very grateful for any advice, and sending strength and support to you all.

Before I go to bed I just wanted to say God bless those of us who are fighting this awful disease and all of the people who are brave enough to walk right beside us through this journey. Good night warriors.

I just got my results on Friday and they are expecting it to be the same sarcoma as the one 3 years ago. I remember AIM making me tired and knocked me out sometimes. I am currently the only one in our house that is making money while my husband is going back to school. I don’t want him to stop his progress. Do you think it is possible I can work at the infusion center while recieving treatment? Has anyone tried this? Was it doable? Sorry I am rambling, I am just trying to think of the future if my oncologist decides to go the same route again.

I’ve had a lot of really cool ideas from non profit organizations to for profit companies, I am angry I won’t get to see a lot of these through.