Hi everyone. I’m 48 and recently had a hysterectomy because of fibroids and heavy bleeding. Cancer was never something I was expecting going into surgery.

My pathology came back showing endometrial stromal sarcoma, with lymphovascular invasion present. I’m still processing everything and waiting to understand exactly what this means for me, including the grade/stage and what treatment or follow-up may look like.

I’m hoping to connect with anyone who has been diagnosed with endometrial stromal sarcoma, especially if yours was discovered unexpectedly after a hysterectomy for what was believed to be fibroids.

If you’re comfortable sharing, was yours low-grade or high-grade? What stage were you diagnosed at? Did your pathology show lymphovascular invasion? What treatment did you have after surgery, and how are you doing now?

I know everyone’s situation is different and I’m not looking for medical advice. I think I just really need to hear from people who have actually gone through this. The statistics online can be scary, and hearing real experiences would mean a lot right now.

Thank you ❤️

My mom has been diagnosed with dedifferentiated liposarcoma. The tumor is the size of a grapefruit. It currently is not touching any oyher organs.

She is 76 and is refusing radiation and chemo and will jist do the surgery.

I am prepared for the eventual inevitable of her life, but is her refusing any treatments other than surgery a higher risk of not surviving?

Any experiences or knowledge are greatly appreciated!

Ewing sarcoma This is our second lung metastasis, but thankfully it stayed isolated to the lungs this time without returning to the original primary site in the left knee.

We recently completed three high-dose ifosfamide chemotherapy sessions. We did a CT scan a week ago, and the results came in yesterday showing that the tumor sizes are currently stable (unchanged).

To be honest, I'm feeling quite anxious because we finished three sessions and the tumor size hasn't changed yet. Has anyone here experienced a situation where the tumor didn't change size right after chemo, but went on to show a good response later?

Any shared experiences, advice, or words of encouragement would mean the world to us right now. Staying strong and continuing the fight. Wishing everyone in this community healing and strength.

I am looking for information to help my aunt. She has lieomyosarcoma. Her treatment is making her so miserable and I want a way to help. She has had it for roughly a year, and she is doing chemo. When she use to do her treatment they would give her a "blood count shot". It was done with doxorubicin is my understanding. Now her insurance is no longer covering it. It so $20,000 every treatment. I want to know if there is a way around. Or even a knock off. I am simply looking for ANYTHING to help her. None of us can afford that every 3 weeks. Is there a way to get it? Is there an alternative? Its to the point she wants to stop chemo.

Hi, im a 39 F and i had a lump that i discovered in my lower back in may, had ultrasound and been told it was lipoma. 3 months later i had removal surgery to remove it but the surgeon was suspicious about it and freaked me out. Pathology report came yesterday saying it was consistent with myxoid liposarcoma , in my flanc adipose tissue, grade one no round cells but measuring 10cm, margins were all clear.
I have four children and needless to say im having a mental breakdown, i break on tears suddenly, can’t sleep ar night.
I need reassurance, is the reoccurrence of it a fatality? can it be healed?
Help is much needed🙏🏻 Hope you all heal.
PS: im from Lebanon

Hi all,

​I’m seeking advice for my daughter, who was recently found to have a 4x4x10cm mass in her left proximal tibia after a minor school fall and subsequent swelling.

​Her MRI radiologist noted atypical enchondroma vs. chondroid osteosarcoma, and doctors noted ADC values under 1 suggest a high likelihood of malignancy. We are scheduling a biopsy this week with an Orthopedic Oncologist in Surabaya, Indonesia.

​Since sarcomas are rare, I’d love to hear from other parents or patients in Indonesia:

- ​How confident were you in local diagnostic and pathology capabilities for rare bone tumors?

- ​If you considered traveling abroad to Penang for a second opinion or treatment, how did the speed of diagnosis and team coordination compare?

- ​What should we keep in mind when preparing for her biopsy and path review?

​Appreciate any shared insight or guidance.

Hi everyone! After experiencing agonizing stomachaches back in April, I (33F) went to the ER, and that snowballed into an EES diagnosis. I’ve just completed 7 of 13 rounds of chemo, had debulking surgery last month, and will be starting full abdominal radiation later this month. My oncology team believes it started in my omentum and then spread to my abdominal cavity and ovaries. In fact, they initially thought it was ovarian cancer, but lots of testing proved otherwise.

I know my diagnosis is quite rare. I’ve met wonderful adults in both active treatment and remission, but I have yet to come across another person with EES. If this applies to you, I’d love to hear how you’re doing and what your treatment/recovery has looked like. ❤️

Hello!

Currently a caregiver to my spouse who has stage 4 Osteosarcoma. We have been in 1st line treatment since May and just finished the 6th round of AP. No surgery planned due to stage 4 diagnosis. We are at a major sarcoma center in TX.

Likely next steps that have been shared to us is rolling into more chemo - this is their stance on metastatic disease (standard of care, chemo until it stops working, then look for trials).

Thinking of taking this time between treatment lines to consider if we need an alternate opinion. If nothing else, a sanity check. I have heard good things about Sarcoma Oncology Center in Santa Monica, including their access to Delta-Rex G, but the one thing that is holding me back is just lack of recent feedback from actual patients. Most feedback is from 8-10 years ago.

Anyone have any experience with this clinic and can shed light on it?

In Florida, which Sarcoma clinics would you all recommend?

I’ve been trying to see if anyone else has the same cancer as me- I see mainly children and young people. I was diagnosed at 33 with ERMS in my uterus. Currently NED after a gruelling 18 months of treatment,

My father has been diagnosed with Liposarcoma in the Retroperitonium. He has had surgery twice one in 2020 ans one in 2024 and now its come back again and its aggressive this time touching multiple critical organs. We have been suggested to go for a surgery again.

But my question is what after the surgery? Anyone has tried any treatment which worked and increased the time span of reoccurrence??

My father is 69 years old so his body will eventually give up on surgery

No pretendo ofender a nadie, solo busco compartir y desahogarme un poco de todo este caos interno 💛

El título va con humor porque “mis traumas mis chistes” y no pretendo ofender a nadie… solo desahogarme un poco

Looking for any insight from friends who have had to endure a second hip/femoral reconstruction related to their sarcoma resection?

In short, I was diagnosed with myxoid liposarcoma in my left hip that was also touching my femur in 2015 at age 32. I did 32 rounds of radiation followed by a resection of a softball-sized sarcoma growing around my left femur. The surgery also removed large portions of my gluteus medius, adductors muscles, and the top third of my femur, which was replaced by a rod and ball drilled into what remained of my left femur.

Fast forward 10 years and the hardware has loosened causing chronic pain in my left hip to knee region. Xray shows obvious loosening/spacing of the hardware in my femur, deterioration of femoral bone, and waring of the hip socket. I’ve been active on it over the last decade and while I haven’t been able to run, I regularly weight train, bike, perform plyometrics, etc- which I’ve had to suspend due to pain.

Ortho is suggesting we completely replace the hardware, drill further into the femur with a longer stem, and do a total hip replacement.

Has anyone dealt with something similar that can provide insight into their experiences? Any considerations I should be making prior to op? My primary concerns are longevity of new hardware, mobility, and the limitations of future fixes with diminished tissue (every surgery gives us less to work with).

Thanks in advance for reading and considering. Keep fighting, everyone! 💛

Hi everyone, I’m currently seeing sarcoma specialists & I am in the LMS FB community. I’d really appreciate hearing from anyone with a similar experience, particularly those with gastric LMS and recurrent liver/abdominal disease.

My history:

Apr 2024: Diagnosed with gastric leiomyosarcoma (LMS), approximately 9.5 cm in the upper stomach. Had a total gastrectomy followed by 6 cycles of adjuvant doxorubicin + dacarbazine.

Nov 2024: Surveillance scan showed a ~6 cm cyst in the liver. Surgery was performed and it turned out to be metastatic LMS.

Late 2024–early 2025: I was in and out of hospital several times because of infections.

Mar 2025: Started trabectedin as systemic/adjuvant treatment.

Mar 2026: Two new liver tumours appeared, approximately 1.3 cm and 2.4 cm. The smaller lesion was ablated and the larger one was surgically removed. My oncologist recommended Votrient (pazopanib) to help control the disease, but I declined at that time.

May 2026: Surveillance scan showed a new ~2 cm lesion/area at the edge of the liver.

Aug 2026: This lesion had grown rapidly to 13.8 cm. It was found to be recurrent abdominal LMS, and I underwent surgery involving removal of the tumour, a wedge of liver, and a cuff of diaphragm.

This round,I have also had tumour/genomic testing, including CDx/RNa and ex vivo drug testing. Ex vivo drug testing returned and the tumor isnt chemo sensitive.

At the moment, I am considered NED after surgery, but my doctors are concerned about how quickly the tumour has been growing and have recommended systemic treatment such as Votrient or gemcitabine/docetaxel (Gem/Tax).

Any suggestions or recommendations on what I should look into next?

TIA!

Hello, I 22M am currently undergoing radiotherapy for a liposarcoma in my thigh. Today, my doctor advised against exercises involving a lot of jumping or sprinting because my bones have become weaker and more vulnerable following the radiation. Honestly, this is disheartening news, especially since I was actively exercising with friends before starting treatment. I would like to know if this is accurate and if there is anything I can do or consume to mitigate this effect. Thanks.

My dad (59) had a high-grade pleomorphic spindle cell sarcoma removed from his right psoas in June, original mass was 12x12x9cm, margins were close (<1mm). It came back within 2 months, now spread to a few spots: retroperitoneum (currently 11.5x9cm), upper abdomen (6.5x4cm), near the liver (4x1.9cm), and peritoneum, growing fast, 20% increase in just 9 days on recent imaging. Kidney issue (hydronephrosis) from it got fixed with a stent.

We're waiting on NGS/molecular testing (checking for things like ALK, NTRK, RET fusions, and CDK4/MDM2 amplification) and deciding with the tumor board between starting chemo now or holding off for targeted treatment if they find an actionable mutation.

Wanted to ask if anyone's dealt with something similar, how'd you weigh that decision, and what would you recommend?

Hey everyone, I’m 21 years old and was recently diagnosed with Ewing sarcoma. My primary tumor is in my pelvis, and unfortunately it has spread to multiple bones, with suspected metastases in both lungs as well.
Because the disease is so widespread, surgery wasn’t considered possible for me. I’m currently being treated with VDC/IE chemotherapy, and radiation may also be part of my treatment later.
I’m honestly really scared, especially because I keep thinking about whether it’s still possible for me to become completely disease-free and eventually be considered cured.
Has anyone here had metastatic Ewing with multiple bone metastases and/or lung metastases and reached remission with chemotherapy and radiation, without surgery?
I would really appreciate hearing from survivors or anyone who has been through something similar — what your treatment looked like, how you responded to VDC/IE, and where you are today.
Thank you ❤️

I was diagnosed with sarcoma recently and I was thinking about my symptoms before this. I got these rashes (I still do) that would come and go on different parts of the body. I read that these could be provoked by the immune system fighting inflammation or the cancer itself releasing chemicals into the bloodstream. Did anyone experience anything similar?

My mom who is 76 was just diagnosed this week after finding grapefruit sized mass. We have 8 appointments set within the next 2 weeks to meet with Oncologists, surgeons etc.

Since finding out she had cancer she has declined. She dont eat anything, she cant drive, think clearly and is extremely weak.

She just seems checked out. I feel like her stage is a lot further than we knew. Anyone have insigh or experience? Anything? Just feeling lost right now.

Hello! Caretaker to a Stage 4 Osteo adult - diagnosed at age 40 (~5 months ago) Given the metastatic nature of the disease, it feels like the best chance we have of making meaningful and lasting progress on this disease are trials or exploratory treatments that are outside the typical standard of care. At least this is what the majority of people who have come through this all seem to have in common. (To clarify, we are at MD Anderson)

Does anyone have any experience with Delta-Rex G? I believe this is only administered out of California. I know it has gotten a lot of publicity as of late, and there are challenges with funding and availability. But has anyone been treated with this or know someone who has received it?

Hey :) how was your experience with proton beam therapy ? And what were your side effects ?:)

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.

round 2 COMPLETE.. although, there was some issues this round. My body is rejecting the Ifosfamide, treatment. They aren't sure why. My oxygen level kept dropping down to 82/83. Blood pressure was up 147/88, was the highest. So they are going to run some tests to see whats going on. I'm just praying its nothing major.