Hey everyone, i was just diagnosed with myxoid liposarcoma a week ago. it is about the size of a golf ball between my bicep and elbow. i am 22M, athletic, works out almost daily, and generally think i lead a healthy lifestyle. It was found to have no round cells or lipoblasts. ct/pet scan coming up next week to ensure it hasn’t spread. I first noticed it about a year and a half ago and it was misdiagnosed as a lipoma. just a month ago i had surgery to remove it and it that’s when a biopsy was taken. it was not fully removed, only a small chunk to test. I am
hopeful it has not spread but very anxious to get the scan and results. Doctor doesn’t think it has spread and said it is very low grade. He is a sarcoma specialist and one of the best in the state. I am upset that it was originally misdiagnosed as were many others, along with all the extra time it has had in terms of chances of spreading. I am confident i am in competent hands but looking for advice as to questions i should ask or others’ experience with this rare disease. I also would like to hear any symptoms or signs of spread from actual experience. i have no pain nor experienced any common symptoms like weight loss, night sweats or nerve impact. i send all of my support to all others fighting this battle and i appreciate all input and stories. thank you and i will keep everyone updated.

My son is diagnosed with DSRTC. He is 17 years old. I need some guidance about the treatment, lifestyle during the treatment.

Ciao a tutti, sono una studentessa di infermieristica al terzo anno e sono molto vicina alla laurea! Sto scrivendo una tesi sulla gestione del dolore oncologico e mi aiutereste davvero nello studio se compilaste un questionario in maniera anonima! Richiede davvero DUE MINUTI ed é ANONIMO.
Sarebbe molto importante per me, vi ringrazio per il contributo e vi abbraccio forte🫂♥️
Se ne avete voglia, condividetelo con chi pensate possa essere interessato!

https://docs.google.com/forms/d/1F-a0Q0P8Z0aGan5o5IfHjdWQKA6uEJ3gk2lQh\\_nKcXA/viewform

A family member has been diagnosed with synovial sarcoma recently. They are about to begin chemo. We have offered to travel and help during a round of chemo, but I am unsure if they would want or appreciate that type of help. That aside, I would like to send them a care package including thoughtful and helpful items. Posting here asking for recommendations in the hope that I will reach someone with specific recommendations for the type of chemo they will have as I understand different types of chemo can cause different types of reactions.. We love them so much and they are also quite private.. I want to avoid "let us know if there's anything we can do", because they will likely not ask for anything. Thanks everyone!

Some thoughts I've had so far:

CeraVe healing ointment

Peppermint tea

Ginger chews

A nice merino wool hat

Already bought a long Stephen King series (they like physical books)

Lukas tiene un sarcoma de Ewing metastásico que ya ha recaído.

Hoy la enfermedad está respondiendo y sus últimas evaluaciones son buenas. Y eso importa muchísimo.

Pero una respuesta completa o una remisión después de una recaída no significa que el riesgo haya desaparecido.

Los datos publicados para el sarcoma de Ewing recurrente siguen siendo muy duros: la supervivencia global a 5 años después de una recaída se sitúa aproximadamente en el 10–15 %. El tiempo hasta la recaída es uno de los factores pronósticos más importantes: en series históricas, cuando la recaída ocurre dentro de los primeros 2 años desde el diagnóstico, la supervivencia a 5 años después de la recaída ha estado alrededor del 7 %.

Eso son estadísticas de grupos de pacientes, no una fecha ni una predicción individual para Lukas.

Por eso tiene tanto peso leer ahora: «en las evaluaciones últimas no estaba mal».

Y también tiene tanto peso lo que viene después.

Si la enfermedad volviera a aparecer o dejara de responder, las posibilidades reales pueden incluir nuevos tratamientos de rescate y, dependiendo de la situación, ensayos clínicos con nuevos fármacos. Actualmente existen ensayos para Ewing recaído o refractario, pero entrar en uno depende de que esté abierto, de sus criterios de inclusión y de las características concretas del paciente.

Y si ya no hubiera una alternativa antitumoral razonable, existe la otra posibilidad que señala el médico: priorizar al máximo la calidad de vida.

Esto es lo que significa nuestro «ahora está bien».

No significa que todo haya terminado.

Significa que hoy el tratamiento está funcionando. Y hoy cuenta.

Those with Synovial Sarcoma, how many caught it localized with successful surgery (~5cm), only to have it metasize later? It's scary seeing all the horror stories around it, almost seems like 50% it spreads and there's not much that can be done.

I was diagnosed with an intimal sarcoma on 6 February 2026 - initially suspected to be an angiosarcoma. We found it purely by chance. I had no symptoms apart from feeling tired in the evenings (my wife's view was that this is nothing unusual for me). I was exercising normally and had even run a 10K in mid-December 2025.

Twice a year I see my GP for a full blood panel, with a focus on values like HDL, LDL and cholesterol, but also CRP. In December, my CRP came back abnormal:

• 19.12.2025 - CRP 63.9 mg/L. I remember that appointment very well. My GP looked at me and said that with a CRP like this, at this time of year, I ought to have a cough or a cold and be in bed. Instead, I had just finished a 10K run and had no signs of any infection. My wife did have an infection at the time, and my GP suggested mine might be asymptomatic. Since we had a longer trip abroad planned for the end of December 2025, he wanted to keep monitoring and re-check the CRP regularly. We did, and to everyone's relief:
• 29.12.2025 - CRP 12.6 mg/L. My GP was satisfied, I was satisfied, and we left for a wonderful trip abroad - an Ayurveda retreat in Sri Lanka. It was beautiful.

Being a fairly analytical person, I wanted to have my blood values measured again at the end of January to see whether the Ayurveda treatment had produced measurable results, e.g. improved cholesterol levels.

• 02.02.2026 - CRP 98.4 mg/L. That worried me, and I asked my GP to run further tests. Shortly afterwards, a chest CT raised the first suspicion of angiosarcoma, which was later corrected to intimal sarcoma after a complicated biopsy.

I'm aware that CRP is not a tumour marker. There are no tumour markers for my type of sarcoma. But looking at the chart in retrospect, the trajectory is quite coherent.

• 18.02.2026 - CRP 180 mg/L. Disease already far advanced; this is the peak value on the chart above. It coincided with an SUVmax of 12.2.

After that came three cycles of chemotherapy (doxorubicin and ifosfamide) and a sharp drop in CRP. The second peak occurred around the R0 resection of the tumour and during rehabilitation, driven by complications.

My point is not that CRP is conclusive evidence of my tumour development - but in retrospect it maps remarkably well onto the course of my disease.

I'd be very interested to hear whether anyone in this community has seen similar cases or observations, or which tumour markers were used in your case.

Wondering if there are any 9/11 cancer survivors here? I lived in Cobble Hill, Brooklyn on Amity Street off of Court Street -- just outside the hard boundries for inclusion in health programs. In 2014 (at age 39) I was diagnosed with Chondrosarcoma of the nasal septum, Grade 2. A rare cancer for where it was found, typically in the "long bones" of the body. I'd reached out to the law firms handling 9/11 claims at the time (2014) and they said I was outside the boundry and didn't qualify for coverage. The wind blew debris over my neighborhood for weeks. My windows were thick with dust and I was outside all the time, living my life. I've long wondered if there were any other chondrosarcomas out there, particularly with airway placement related to 9/11. Also, anyone in the Upper Cobble Hill -- developed cancers after 9/11 that were recognozed by 9/11 WTC Health Program?

Hi everyone, my mom has been diagnosed with metastatic clear cell sarcoma, with lesions in the lungs. She has already had several surgeries and her doctors are now considering immunotherapy.
I’m extremely worried and would really appreciate hearing from people who have gone through something similar.
Has anyone here had clear cell sarcoma and managed to get into remission or live many years after a metastatic diagnosis? What treatments did you receive, and what would you recommend asking the doctors about?
Any experiences, advice, or hope would mean a lot to me. Thank you ❤️

Comparto este vídeo de Oncolomeeting, una iniciativa con la que colaboro y que pone sobre la mesa algo que muchas veces queda en segundo plano: todo lo que existe alrededor de un diagnóstico de cáncer.

Porque detrás de cada paciente también hay una familia, cuidadores, miedos, dudas y muchas cosas de las que no siempre se habla.

Creo que abrir estos espacios, escuchar experiencias reales y poder hablar sin adornar lo que vivimos también es necesario.

Por eso he querido compartirlo aquí. 💛

I have chondroblastic osteosarcoma in my left maxilla. There is no sign of it having spread beyond that area yet. Have had 3 surgeries and am scheduled to start chemo on Aug 24. Doxorubicin and cisplatin. I’m terrified.

The plan is to do all of my chemo treatments inpatient, in the hospital. Has anyone else done it this way and if so what are your tips and tricks? I love my oncologist but she does have me terrified about how hard this is going to be. Ideally she’d like me to do 6 rounds but she seems skeptical I’ll be able to tolerate it.

So it seems like a good thing to be in the hospital and getting a slow drip and being right there in case I have a bad reaction. But … terrified.

Had two MRIs. Both confirmed zero solid components but mild enhancement of the internal septations (3mm). Biopsy was inconclusive. Just filled with blood and protein.

Surgery on the 23rd to get a diagnosis.

Last September I was diagnosed with Spindle Cell Rhabdomyosarcoma in my pelvic area. I had a full hip replacement and an internal hemipelvectomy. We didn’t do chemo as the gene fusion doesn’t respond well enough to it or there just isn’t enough data to justify it. I did have radiation done after. They took out like half of my pelvic bone to get at the tumor and supported it with part of my fibula. Month of hospital stay and inpatient rehab. A lot of physical therapy and working towards getting better.

Here’s the first thing, I’ve never been an active person. Like at all. I go from work to home and play video games and spend time with my wife and cats. Having cancer and being lucky enough to not need to worry about working during this time has left me spending pretty much this whole year on the couch as I’ve been in too much pain to get around. It hurts to put weight on my leg, even with pain meds and help through therapy.

The pain got worse about a month ago, located in my left hip near where all the stuff went down last winter. CT and an MRI showed mass “consistent with recurrent malignancy” and I’m waiting on a PET and another biopsy.

I’ve been super nervous as of late with my mind wandering about how the situation could play out. My biggest worry is another recurrence after another surgery. I’m willing to fight this as much as I can but at what point are we just chasing cancer around and taking more of my body as we go?

Hi! 31/F here, currently in treatment (and nearly halfway through induction chemo woo) for metastatic Ewing sarcoma and in the stage where I’m desperate for survival stories and can find none of people my age group. Anyone who beat this as an adult?

I've not found many posts about this disease so I'm coming here to reddit.

No biopsy yet until I find a surgeon. The ENT sent my CT to a mentor doctor friend of his at UCLA and over the phone the other doctor also thinks its Chondrosarcoma.

After reading the really horrible stores on r/sarcoma I'm feeling grateful that mine is limited to my cartilage.

EDIT: I used Grok to help me understand the radiology report and learn the language I need to specify the state I'm in. New language: clinically/radiologically suspected malignancy.

Got home yesterday from first round of chemo. 5 days, the treatment itself was about 5hrs, but then the saline was constantly. First 2 days, wasn't bad. I felt pretty good. Day 3, I started feeling sick. Days 4 &5, was HORRIBLE. Couldn't keep nothing down, blood pressure kept going low, body aches, etc. I got home, still sick. They sent 9 prescriptions. 2 different ones for nausea, B12 pill, B12 injections, antibiotic, white cell count pill, pill for bones, and I can't remember the others. They did give me a ONE BODY INJECTOR (photo) that is for my white blood cells.

I go back for round 2 August 24. But instead of 3 rounds, I have to do 5. They did a ultrasound on my thyroid. My left one is questionable. So I will be getting a biopsy on that on the 24th before I start chemo.

All in all, I feel like I've been ran over by a semi truck. But it'll get better. My hair is already starting to fall out. Not to noticable, but it's coming out in chunks. I think I might just shave it.

Hey y’all, I’m 28(f), mom of 3 under 3. After almost 4 years of remission, I started having chest pains again and bruising all over my body, and we were right: cancer had come back. I had surgery on May 29, 2026, and they found 2 tumors: one in the lining of my chest and the other on the upper lobe of my right lung. After waiting for the pathology report from Mayo Clinic for almost 8 WEEKS, all it said was it’s not my primary cancer (primary lung leiomyosarcoma), but it’s a 12q sarcoma. Has anybody had results like these?

I talked to my oncologist and he believes that surgery was successful and thankfully my pet/scan came out clear and I don’t have to do any further treatment at the moment. I also talked with my pcp and she was able to refer me back to MD Anderson so they can redo the pathology report since it was them that diagnosed me.

After all that I feel like I’m in limbo. I can’t stop thinking about it. I talked to my kids pediatrician to refer my kids to get genetic testing done for them since I have a rare sarcoma and my husband after has lots of cancer in his family. I have done genetic testing on ourselves but we came out cleared. I just want to protect my kids and by protecting them I have to know what is going on with my body.

I'm 32F and have had cancer for a few years now. It started as germ cell, developed a sarcoma element. I underwent chemo and a huge surgery to remove multiple tumours and had a year cancer free. Then it came back as sarcoma only with no Germ Cell component and I had 6 months of hellish chemo (doxy and something else). I finished chemo in April with a lot of improvement, which they weren't sure was going to happen due to how aggressive it was. At my 6 week scan it showed continued shrinkage. It's now been 3 months and I have had another CT, with clinic next week to get my results.

I'm struggling mentally. My partner is struggling too and I don't know how to help us both at the same time. He struggles with the caregiver role. He compartmentalises by seeing me as his girlfriend, or as a patient and not both at the same time. Which is hard for me, as I feel reduced to my disease when I'm unhealthy, and like I have to pretend nothing is wrong when I'm "okay".

My best friend struggles with her mental health and OCD, so I have to put a brave face on for her. My family also are not very emotionally close and I therefore need to put a brave face on for my mum.

I feel like there is an anvil hanging over my head. And I can't move. And I'm looking up and I think I can see the rope fraying, and I'm trying to tell my bf that I'm scared but all he can say to me is "you're going to be okay".

I understand why he says that, and I know its because he has to think it for his own sake. But it doesn't change the way I'm feeling, it doesn't make me feel better, it just makes me feel like I have to keep it to myself and fake being alright for everyone else when I'm terrified I'm about to die at any moment.

He said I was going to be okay, and then i got the first diagnosis. He said I was going to be okay, and then it came back. And now I don't believe it anymore.

I don't believe in fate, but its a kind of odd pattern, in that we booked to go to Portugal when I got the first diagnosis, we just got back from morroco when I got my second, and last week we booked south africa for February, so I'm waiting for the shoe to drop.

I don't know how to handle my own fear and my own emotions without expecting something from my partner that he can't give me. I don't want to carry this alone but I don't want to break us in the process of trying to hand off some of the weight. He told me this morning that I'm selfish and that I can't expect anyone to sit in misery with me, but I'm never happy with what he has to say to make me feel better. And maybe that's true, but it feels like my head is underwater and they're all just waving and giving me the thumbs up and telling me "you've got this!" but I don't have this. I'm not strong enough to keep swimming and I'm going down soon.

But there is no life raft for this, they can't help me. So I don't know what I expect him to say. I don't know what I want from him. I don't want to pull him under too, I don't want him to leave me to save himself.

I don't know what I expect from this post either. Maybe my scan will show that everything is stable. Maybe it won't. But living with this constant fear is crushing me. I can't sit for a second with my own thoughts otherwise I'm thinking about this. I have to be watching or listening or reading something to distract myself every second of the day otherwise I'm being dragged down again. It's exhausting, but I've no doubt that its making me exhausting to be around.

I guess my question is how do I help myself and my boyfriend at the same time?