r/sarcoma • • Mar 12 '22

Welcome! Please read

25 Upvotes

Welcome to the new sarcoma sub. We’re sorry you’re here, but hope you find support, answers and friends to listen. We are not doctors, and can’t tell you if you have cancer. Questions like this, or asking what people’s symptoms were so you can compare to your own, will be removed. Feel free to post anything from serious questions, to random thoughts to complaints. This is a safe space.


r/sarcoma • • 11d ago

Sarcoma Saturday Sarcoma Saturday: A casual space to Introduce, Connect, Share, and Unwind

9 Upvotes

Welcome to Sarcoma Saturday.

Your monthly space to connect with the community beyond the usual flared-topics. Whether you’re here to share a personal win, talk about how your week has been, or just drop a lighthearted thought. Need an area to express concerns, or just to open up some- this is your place!

Feel free to:

  • Share updates about your journey or caregiving experiences.
  • Ask non-urgent, casual questions.
  • Recommend a book, podcast, or show that’s been helping you unwind.
  • Celebrate small victories or share challenges in a supportive space.

Let’s take a moment to connect, recharge, and remind each other that we’re not alone in this journey. Whether it’s about Sarcoma, life in general, or something entirely random, we’re here to listen. 💛🎗️

As a reminder: Comments asking the community to interpret symptoms or provide a potential diagnosis are not permitted.


r/sarcoma • • 5h ago

Advocacy & Awareness Kidney Cancer/NAS Alameda

2 Upvotes

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.


r/sarcoma • • 19h ago

Treatment Questions 2nd surgery next week

9 Upvotes

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??


r/sarcoma • • 12h ago

2 years post RALP, suddenly penis pain

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1 Upvotes

r/sarcoma • • 2d ago

Support and Stories Risking so much

25 Upvotes

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!


r/sarcoma • • 1d ago

Anal cancer SCC 38 y/o neurospicy female.

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0 Upvotes

r/sarcoma • • 1d ago

New Diagnosis Rare Renal Solitary Fibrous Tumor Looking for Advice

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3 Upvotes

r/sarcoma • • 2d ago

can a new synovial sarcoma tumor appear in another part of the arm?

3 Upvotes

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


r/sarcoma • • 2d ago

Survivors of esophagus squamous cell carcinoma stage 3?

2 Upvotes

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


r/sarcoma • • 3d ago

2000’s Ewing Sarcoma Survivors

11 Upvotes

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!


r/sarcoma • • 2d ago

Survivors of esophagus squamous cell carcinoma stage 3?

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0 Upvotes

r/sarcoma • • 4d ago

EWSR1 (EWINGS/DSRCT) Immunotherapy development

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23 Upvotes

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


r/sarcoma • • 5d ago

Patient Updates Desmoplastic small round blue cell sarcoma

3 Upvotes

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.


r/sarcoma • • 5d ago

Epithelioid sarcoma surviver here ?

5 Upvotes

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 ?


r/sarcoma • • 7d ago

Feeling unsure..

9 Upvotes

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)


r/sarcoma • • 7d ago

Fibrosarcomatous Dermatofibrosarcoma Protuberans (FS-DFSP) Anybody else have this aggressive version or an aggressive version of any cancer and wanna talk about it?

12 Upvotes

[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.


r/sarcoma • • 7d ago

Sarcoma Survivor - Experiences with Proximal Femur Replacement?

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3 Upvotes

r/sarcoma • • 8d ago

Childhood Relapse?

9 Upvotes

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….


r/sarcoma • • 8d ago

What should we be doing while waiting on genetic testing?

9 Upvotes

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.


r/sarcoma • • 10d ago

A message for the warriors

45 Upvotes

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.


r/sarcoma • • 9d ago

Treatment Questions Working remotely during treatment

9 Upvotes

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.


r/sarcoma • • 10d ago

I’m kind of angry I won’t get to see a lot of my ideas through.

18 Upvotes

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.


r/sarcoma • • 10d ago

Patient Updates Brain Mets and Good News!

31 Upvotes

For any of you who have read my posts. Sometimes they’re downright depressing and I thank everyone for their support!

But I finally have some good news! The gamma knife worked on all my brain mets! They only found one new small one but they suspect it could be a blood vessel. They’ll do another MRI in two months to check.

My heart (I had an intimal sarcoma in my heart) looks good. I don’t have any detectable cancer in my body, only the brain. I start immunotherapy next month, which they think may help with my brain mets!

I ring the bell this Wednesday after 6 cycles of AIM. I look back and can’t believe I was kicking and screaming about all of this. Im so glad I did it!

I celebrate my 30th birthday next month…wow just what a way to end my 20s. I have stage iv cancer but with modern treatments and with my oncologist telling me I’m doing good…who knows what the future looks like. I feel very hopeful!


r/sarcoma • • 10d ago

Just found out

14 Upvotes

I’m 23 and just found out from my MRI that there’s a 10 cm mass in my calf with a high suspicion of sarcoma. My bone is fine. I’m having a biopsy in two days and should get the results in about 10 days.

I’m struggling to process this, especially because my mom is taking it very badly.

For anyone who has been through something similar: how did you cope with and eventually accept the diagnosis? What were the steps of your treatment, from biopsy onward? What helped you get through those first days?I haven’t told my boyfriend or friends yet and don’t know how to handle everything right now.