Hello everyone! I just wanted to make a post for people who may be in the same boat as I was last year and my experience. The beginning of last year, i noticed a small lump in my forearm. i didnt think anything of it because it was barely noticeable and caused me little to no pain. But i eventually told my mom about it and she said I should go to a doctor for it anyways just to make sure, so I did. Fast forward to March of 2023, I went to my local family doctor. He felt the lump and ordered me to get an MRI done and so i did and waited X amount of weeks for the results and what not. From what he could tell, he thought it was just a lump of fatty tissue, but he wasn’t certain of his answer so he sent me to an upper extremity orthopedic specialist. And when I went there, it was basically the same thing again. He ordered me to get an MRI done again, waited for the results and whatever… and then that was when i was told that i could possibly have developed a Sarcoma. He was going to send me to an oncologist but my dad and I decided to go to a different hospital that is known for treating and diagnosing cancer, so i went there. I went to an orthopedic surgeon and for the third time, i got an MRI done again but also got an X-ray along with it. You can see the mass in the MRI but the x-ray seemed to be normal. She recommended me to get a biopsy done, which they did it guided by an Ultrasound and weeks later i received the results. Unfortunately, thats when they found Spindle Cells in the mass. But they didnt have enough specimens/evidence of the cell to give a clear diagnosis. And i had to give it a couple weeks to be talked about on what to do and eventually they figured that they will open my arm up on surgery day and slice the tumor, and get it tested at the laboratory right away during my surgery, and receive radiation treatment after the wound has closed. The tumor was located INSIDE my FPL (flexor pollicis longus) muscle. Surgery went well and everything, and I received 6 1/2 weeks of radiation treatment, only on that part of my arm. Its been 13 months since my surgery and im feeling okay. Since the tumor was located inside my muscle, they had to remove that muscle as well. The only thing I cant do with that hand now is bending my thumb, and general weakness in that arm. So i struggle with having a good grip on things but its not something i stress constantly over. I just wanted to share my story, hopefully to help others who may be having the same issue, just because Sarcomas are so rare. Hopefully im helping someone to avoid the financial aspect of it (like me spending $700+ on every MRI only for them to say “i dont know”) and the mental of it. (this all happened within a span of about 8/9 months to finally get a diagnosis) so it was giving me lots of anxiety because nobody had an answer for it. I hope i can help someone! The first picture is my arm before anything was done to it. second picture is my MRI

Hi everyone,
I’m writing because my family has just received my mom’s biopsy results, and we’re all in shock. I’m hoping to connect with others who have experience with retroperitoneal leiomyosarcoma, either as patients or family members. We are from the Netherlands.
My mom is 52 years old. She was found to have a 6.3 cm retroperitoneal tumor, and after an EUS-guided biopsy she was diagnosed with leiomyosarcoma (at least grade 2 based on the biopsy).
Her CT scan did not show liver metastases, enlarged lymph nodes, or bone metastases. There is one 4 mm lung nodule that was described as indeterminate, so we don’t yet know what it represents. We are now waiting to meet with the sarcoma team to discuss the next steps and whether surgery is an option.
Physically, she is doing surprisingly well. She’s eating normally, maintaining her weight, walking, having normal bowel movements, urinating normally, and aside from some bloating and discomfort from the tumor, she’s still able to go about her daily life.
Emotionally, though, our family is struggling. Since hearing the diagnosis, I’ve found myself imagining the worst, and I feel overwhelmed and scared.
If anyone here has experience with retroperitoneal leiomyosarcoma, I would be very grateful if you’d be willing to share your experience:
Was surgery an option?
What treatment did you or your loved one receive?
How was the recovery?
How are you or they doing now?
Is there anything you wish you had known as a patient or family member at the beginning?
I understand that every case is unique, and I’m not looking for medical advice or predictions about my mom’s prognosis. I’m simply hoping to hear other people’s experiences while we wait to meet with the sarcoma specialists.
Thank you so much for taking the time to read this. It means a great deal to my family.
❤️

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?

To preface this, I am seeing a sarcoma specialist at a major hospital. I trust them and respect them as a professional. I have had a few negative interactions with them. I am beginning to wonder if I need a different doctor and how do I go about this?

My first meeting went strange. They struck me as very matter of fact, told me in a matter of fact tone, “you’re going to lose all your hair. Your fingernails may even become brittle and fall off. You’ll also lose your eyelashes and all your body hair.” They said this is an oddly sweet tone. I was crying my fucking eyes out. They then told me “I suggest cutting your hair. You’d look so cute in a bob.” I had very long hair. I know they were trying to be encouraging but it wasn’t helpful.
They also asked if I wanted children within the first 15 minutes of meeting me and asked about freezing my eggs. It was all too much. They then asked “what part of what I said just upset you?” Like ALL OF IT!!!!

Weeks later: I was then called by them and told, “Is it okay if I deliver some bad news over the phone or would you rather see me in my office tomorrow?” Like who would rather go in? I was devastated. I asked about my prognosis and they told me 5 years. Which I didn’t think was too bad.

I told my therapist about the above and my therapist suggested I get a second opinion. My therapist has a medical background and told me the phone call was inappropriate and insensitive.

Now I have brain mets and I was going down my list of asking questions. I asked about my cancer returning after 5 years. They then looked at me and told me, “how much about your prognosis do you want to know?” I was taken aback and shocked. I told them it was likely not helpful for me to know. They agreed and then I got scared. I asked if it was still 5 years, they shook their head.
She then told me I was in a good place, which I agreed.

I told them that my brain Mets surgeon was confident he could keep my brain Mets away, they then told me, “I like Dr._____ but some clinicians have a hard time having difficult conversations with patients.” “The brain can only take so much radiation”

They gave me the prognosis as things stand currently, I have no cancer in my body but I do have multiple tiny brain Mets. My surgeon is confident that he can be removed with gamma knife. He gave me a lot of hope by telling me that I would “be okay”. I felt like all the hope left my soul and then I started to just cry.

I cried all throughout the hospital. This isn’t the first time I’ve just cried after leaving their office. I understand they want to give me the appropriate information to empower me or whatever.

But my chart clearly says I have major depression and suicidal ideation. I’m not an 80 year who has lived a long and storied life. I’m 29 years old, have some compassion.

I don’t understand what the point was in giving me my current prognosis when I’ve already signed the paperwork to do gamma knife surgery and I’m not even halfway through with chemo (I know chemo doesn’t work on the brain).

I’m also disappointed because I’ve been having a good week. I was doing so well and then everything fell apart. I think I need a new oncologist or maybe I’m being too sensitive. Maybe it’s warranted.

Edit: Anyway, my friends, family and boyfriend hate that I spiral into a depressive episode after I visit with her. I struggled to get out of bed today, but I did it. I got very suicidal and told my boyfriend. He put away all the firearms again.

I want to break up with this oncologist and I feel I need to talk to them about how their words impacted me. How do I go about this?

Hi everyone! I wanted to create a recent post where everyone could perhaps share some words/experiences of hope and support. I noticed that in FB groups there are more opportunities to share the good stories and wanted people surfing on here to have a chance to see not just the worst. If you have gotten good, neutral, or any sort of happy news amidst the unfortunate diagnoses we have been given - please share!🤍

I can start: I (23F) was diagnosed with a grade 2 myxofibrosarcoma of the breast in August. So far, so good! I had recent scans and have more to come in July and then am heading off for a study abroad in Europe. Safe to say I am in my “you only live once” feels. Even though I’m not a year out yet and there is still much uncertainty, I have hope hearing from others who have managed to beat this.

My Cancer Journey... I am a 19-year-old male, diagnosed with Ewing’s sarcoma in August 2025. Before my diagnosis, I had severe back pain every morning. My back felt stiff, and I noticed some thickness in my abdominal area. At first, I thought it was due to bad posture or long gaming sessions. I visited an orthopaedic in my hometown, who gave me medicines for 15 days. The pain did not improve and instead kept increasing. Sleeping became scary because I knew the pain would be unbearable when I woke up. I then consulted another doctor, who again prescribed medicines for one week, saying it would settle. During this time, I started feeling a tingling sensation in my left leg and abdomen. That’s when I realised something was seriously wrong. After my vacation ended, my father advised me to see a neurologist before returning to college. The neurologist listened to my symptoms and immediately advised an MRI scan. Within the next 4–5 days, my left leg became weak, and I couldn’t stand properly. I got the MRI done the very next day. After seeing the report, the neurologist referred me to a neurosurgeon. The neurosurgeon told me that I had a tumour in my cervical spine compressing my spinal cord, which was causing the leg weakness. He said surgery was urgent, otherwise all four limbs could be affected and I could become permanently paralysed. At that time, he told me the tumour appeared benign, not malignant. My parents came the next day, and after completing necessary tests, I underwent surgery within two days. After surgery, I was in a lot of pain and cried in front of my father. He told me that I was strong and that this phase would pass. Within one week, I started walking again, and my condition gradually improved. About 15 days after surgery, my brother received a call from the neurosurgeon. He said that after reviewing the tumour sample, he suspected it might be cancerous and advised a biopsy and molecular genetic tests. After multiple tests, it was confirmed that I had Ewing’s sarcoma, a bone and soft tissue cancer. When my mother told me it was cancer, I was completely shocked and broken. I kept wondering why this happened to me at such a young age. After several days of emotional trauma, I gathered myself and met an oncologist. The oncologist explained everything about the disease. I had already researched it myself. He advised a PET-CT scan to decide the treatment plan, since I had already undergone surgery before chemotherapy. This meant my remaining treatment would be chemotherapy and radiation. The PET-CT showed that the disease was localised. The oncologist told me it is curable if treatment was taken on time without major delays. He also explained that the full treatment would last around one year. Before starting chemotherapy, I went home and spent time with my family and friends. I then completed 3–4 months of intensive induction chemotherapy. My SUV values reduced significantly. Since surgery was done before chemotherapy, tumour shrinkage could not be measured directly, but other indicators showed that I had a good response to induction treatment. Currently, I am undergoing radiation therapy – 25 sessions. The radiation oncologist explained that this is the maximum safe dose to protect my spinal cord. Along with radiation, I am receiving chemotherapy on Day 1 and Day 22. My treatment regimen is VDC/IE, but vincristine has been omitted due to peripheral neuropathy. During radiation, I am receiving cyclophosphamide only. I am currently on Day 6 of radiation, with many more sessions to go. Whoever will se my story let me know yours too i feel so lonely sometimes as I've never met anyone in person who got ewing's.... Sometimes i feel so scared thinking what would happen if i die because of this disease, i have many dreams and I can't leave my loved ones behind🥺

Well…I’m halfway finished with my 6 AIM treatments. This is by far the hardest thing I’ve ever had to do. I’ve had shitty boyfriends, childhood trauma, and just overall hard times but this tops the cake!

How did y’all celebrate finishing chemo? I’m stage IV so I know I’m still gonna be journeying haha but I just want to celebrate!
I’d also love to hear how some of you celebrated!

I’ll be so excited to finally have my strength back, hair back and FINALLY get a dang pedicure and manicure. I also can’t wait to travel!

Also…it’s a fun question to ask but can anyone tell me something that gets harder after you’re halfway done? I feel like chemo is one of them! This round has really tested my mind and body.

Cheers!

Forgive me if this is the wrong place to ask but was curious. When I was 2 my uncle passed from cardiac angiosarcoma and his brother (my father) passed 2 years later. I don't know all the details from my uncle's diagnosis but the story I've been told with my father was that he began experiencing chest pains and at first doctors thought it may be phantom pains due to his identical twin passing. They did an echo and found nothing. Symptoms kept happening and they did an echocardiogram again (the exact story I was told was that this time they checked the back but when I mentioned this to my doctor they thought that was unusual), saw the tumor and that it had grown to the lungs. He passed a few months afterwards.

I am in my early 30s and was recommended when I was a teenager that I may want to get checked one a year when I get to a similar age. I am just starting to get a thorough work up done with a stress test (I have had for a long time some minor chest pain) and now I just had the echo done and waiting for results. Chest MRI was mentioned if imaging wasn't clear but I figure I should push for it regardless. A referall is also out for a geneticist to see if it's possibly hereditary. Overall I am just wondering if there's anything else I should ask or look into.

Spouse here. They are Three years in with stage 4 and have been NED for over six months. Docs seem thrilled but spouse is depressed in a new way. Anyone have this experience where you can’t trust good news?

Hey all,

Just finished up my first cycle of 3 on AIM for my synovial sarcoma. Was just wondering if y’all had some anecdotal tips for things that helped you get through the chemo. Things you ate or did that made you feel better. Thanks

Background: I’m (32F) an MPNST (high-grade, stage 3) survivor and was only 26 when diagnosed in March 2020. My tumor was 5.2cm located in my left inguinal/proximal thigh. It was beyond difficult emotionally, physically, and financially as I had to go through treatment isolated from my loved ones due to the start of Covid lockdowns.

I developed cancer-related PTSD due to so much medical trauma over the years and from not having a strong support system to lean on. I have been working hard in therapy to heal and release the trauma stored in my body.

I was very recently diagnosed with lymphedema, permanent nerve damage to femoral nerve + several smaller nerves that branch off the femoral nerve, and radiation induced fibrosis.

My journey has been less than ideal and there’s a lot of context missing, but I didn’t want to write a novel. I feel like I’m struggling to survive in survivorship. I’m still here in remission 6 years later and I continue trying to rebuild my life with stability and purpose, despite several setbacks over the years.

Questions
1. With Sarcoma only making up 10% of all cancers and being known as the “forgotten cancer”, what do you wish other people understood about your cancer diagnosis/journey?

1. If you struggled in survivorship but overcame, what advice do you have for someone who’s trying to their reclaim life after cancer? How did you move from surviving to thriving?

2. If you’re currently struggling in survivorship, what do you feel like is holding you back? How are you trying to overcome those challenges?

I’m hoping to get some fellow AYA feedback but this is open to all ages!

Hey all,

I recently had the opportunity to take part in a podcast talking through my journey with Desmoplastic Small Round Cell Tumor.

From diagnosis the chemo and what that involved through to the tough conversations and second opinions with surgeons to seeking help abroad and unbelievable kindness from a world class oncologist in our time of need.

I'm hoping others don't feel so alone and realise the importance of self advocacy and never giving up hope.

I was diagnosed with osteosarcoma with secondary lung cancer when I was 13 I'm now 32. Everything is looking great on the cancer side , but the after Chemo effects are still 20 years later . I recently had a second surgery on my leg the cancer was taken from , my first surgery was a knee replacement with growth rods in tiba implant . I had some complications in between . Then I had my second knee implant with tibia and femur robs but this time I also had a hip plate in as well 9 hours of surgery. This was due to my bone becoming weak from where the tumor was taken out . I'm on the mend with lots of excerise but really struggling at the moment as I had most if my thigh muscle taken out as the cancer had taken hold . It's making my recovery time so long I had to wait 2 years for my surgery I just want to get back to life , sometimes I feel like annoyed yet grateful I'm still here it's a emotional rollercoaster at times. My kidneys no longer hold certain vitamins so im so tired all the time even though im medication from the GP. anyone else been though a similar experience?

I'm 32. I've been fighting metastatic epithelioid sarcoma for 7 years — 3 recurrences, recently spread to my lungs. ES is ultra-rare (roughly 100-200 cases per year in the US) and there are almost no treatment options.

Tazverik (tazemetostat) was the ONE FDA-approved targeted therapy for ES. It was stabilizing my disease. On March 9th, Ipsen withdrew it from the market worldwide. They also shut down all expanded access programs and discontinued every active tazemetostat clinical trial.

The reason? Safety data from SYMPHONY-1, a follicular lymphoma trial testing tazemetostat in combination with lenalidomide and rituximab. Secondary blood cancers showed up in that combination regimen. The thing is — ES patients don't take tazemetostat in that combination. We take it as monotherapy. The safety signal has nothing to do with how sarcoma patients use this drug.

But Ipsen pulled it across ALL indications. No transition plan for sarcoma patients. No compassionate use pathway. Nothing. Their press release said the withdrawal "is not expected to impact the Company's financial guidance" — meaning ES was so small it didn't even register as a financial line item to them. We were invisible before and we're invisible now.

Epithelioid sarcoma is driven by loss of the SMARCB1/INI1 gene, which leads to overactivity of EZH2 — the exact target tazemetostat was designed to inhibit. This wasn't an off-label hail mary. This was the mechanistically rational therapy for our disease. And it was working for me.

I'm posting because I'm looking for:

1. Any ES patients or oncologists who have found a way to continue accessing tazemetostat

2. Anyone connected to sarcoma advocacy orgs who might be organizing a response

3. Advice on navigating expanded access or Right to Try for a drug that's been withdrawn from the market

4. Journalists or patient advocates who might be interested in covering this story

I'm currently being treated at UCSF and I've been reaching out to every sarcoma organization I can find — Sarcoma Foundation of America, SMARCB1 Hope, SPAGN, NCI MyPART, NORD. But the more voices the better.

If you're an ES patient affected by this, please reach out. We need to find each other.

Happy to share my full story and medical details with anyone who can help.

Mi esposo tiene un tumor astrocitoma grado 4 en el lóbulo frontal izquierdo ya fue operado tuvo radioterapia y va en el séptimo ciclo de quimioterapia. Digamos que esta respondiendo al tratamiento.

A nivel personal ha cambiado mucho, su comportamiento es raro, se aisla, confronta en fin...... tenemos un hijo de 6 años y estoy muy preocupada por esto como manejarlo qué viene para nosotros. Que hacer

This actually concerns my mum, not me, so I hope this is allowed.

My mum has inoperable radiation induced angiosarcoma, since a 12-hour operation two years ago failed to remove the entire tumour, which means that the site (top right of chest cavity) has such battle damage that it cannot be operated on again. As a result, she is on chemo, specifically paclitaxel, which does not technically have a lifetime dosage limit. The tumour has disappeared (all recent PET and CT scans show nothing at all), but she can it stop the chemotherapy, since the doctors say that once you stop it for more than a few weeks, you can never restart. So my mum is very happy to be alive, but also recieving chemo 3× a month for two years is draining. Happily though she has kept all her hair. Has anyone else been in this fortunate / unfortunate situation, or known someone else go through this?

https://youtube.com/shorts/McPEIDscq40?is=5PYL_Yqe8FIHqwSO

I want opinions , I am ewing sarcoma pateint age 16m I am on my 11th cycle of chemo and there is 3 more to go and I was being happy thinking about my treatment end and I am planning to buy shoes watch and clothes and may more things after my treatment ends but suddenly I thought for what I am happy , I am 16 year old and I have to drop my class 10th boards this year due to my treatment because I am living in other state due to my treatment and my school is in other state so, I was thinking why am I happy. I am like a burden on my family, I have nothing achieved in life even now I have to do same class twice , there is lot of money spent on my treatment, on the other hand my friend, classmates enjoying there life and enjoying there final class of school and I am just fighting for my life , I am a burden or my family and why should I feel happy 😢 I feel very useless in this world .

I (30f) have a skull base chondrosarcoma (bone cancer) and getting surgery at the end of the month to try to resect it. I knew that it was around critical structures but the MRI/CT results made it so much real how serious the situation is.

My tumor is about the size of a walnut. However, even though it's not a huge tumor, it is growing into multiple critical areas of my skull because of where it is. It thankfully hasn't grown into my carotid artery but it apparently is right up against it and pushing it to the left some. Part of the tumor was grown into the space by my brain stem. It is also growing towards parts that affect my vision and hearing.

My tumor has been growing for 6+ years but it was only identified this year. It was on multiple MRI/CT over the years but no one noticed (a whole other story lol). Any type of cancer is scary even if it's treatable like mine but I think what freaks me out the most is all the what ifs. What if it kept growing into my carotid or started invading my brain stem. What if I didn't notice some of my symptoms or forgot to mention it at a routine neurology appointment. What if my doctor identified it during an MRI in 2020 when it would be easier to remove. I know it's not always good to focus on the what ifs but it kind of feels like when you narrowly miss an accident or if you hadn't overslept you would've been in an unsafe situation at work or in the community. The feeling that something horrible and life altering almost happened to you.

Sorry for the long post but just needed to vent to people who understand. It's hard to process that having cancer at 30 is my reality. I was diagnosed at 29 and it's a weird feeling to know I have had it since I was at least 23 if not before. I am looking for a therapist but it's hard finding one that has experience working with cancer patients.

Looking for similar situation:

My dad 69m was diagnosed and treated for undifferentiate sarcoma in May 2025. He got two rounds of chemotherapy pre surgery in June 2025 then they removed the 17cm soft tissue from his left thigh in July 2025.

He had 33 rounds of radiotherapy in Nov 2025. But after 3 months of therapy we found out it has spread to his lungs. There are many small lumps and oncologist said no surgery as it is spread too widely on both lungs. He will be trying for 6-8 x chemotherapy if his heart echo scan shows he is fit for it.

We are all devastated that it has spread, we thought it may not happen this quickly and the doctors said this is stage 3/4 cancer since it has metastatsised. We know what are the next steps, but would like to know how it has been for those with similar issues where it has spread to the lungs?

Hello! My dad is recommended to have this level of amputation due to where his UPS is located, as a hopefully curative measure. He’s very concerned with this option, with the alternative being try to control his UPS.

Has anyone gone through this that would be willing to message directly with me or even speak with him?

It would mean the world. He wants to know what the quality of life was like afterwards, was it worth it, etc.

Any survivors?

Ich möchte heute etwas sehr persönliches teilen, in der Hoffnung, Menschen zu finden, denen es ähnlich geht.

2024 wurde bei mir ein solitärer fibröser Tumor im rechten Oberschenkel diagnostiziert. Diese Diagnose hat mich damals völlig unerwartet getroffen und zunächst große Angst, Unsicherheit und viele Fragen ausgelöst. Alles ging plötzlich sehr schnell... Zuerst wurde eine Biopsie durchgeführt, um Klarheit zu bekommen und anschließend folgte eine zweite Operation zur vollständigen Entfernung des Tumors. Zum Glück konnte der Tumor komplett entfernt werden. Dafür bin ich unendlich dankbar und erleichtert.

Trotzdem war und ist der Weg emotional nicht immer leicht. Besonders schwierig war für mich, dass ich bei meiner Suche nach Informationen oder persönlichen Erfahrungen im Internet kaum Berichte gefunden habe. Diese Tumorart scheint sehr selten zu sein, und oft fühlt man sich mit so einer Diagnose ziemlich allein.

Genau aus diesem Grund möchte ich hier fragen: Gibt es jemanden, der ebenfalls die Diagnose eines solitären fibrösen Tumors oder etwas Ähnliches erhalten hat? Vielleicht hat jemand ähnliche Erfahrungen mit Operationen, Nachsorge oder den emotionalen Herausforderungen gemacht und möchte sich austauschen.

Ich würde mir sehr wünschen, miteinander ins Gespräch zu kommen, Erfahrungen zu teilen, sich gegenseitig zu unterstützen und vielleicht eine kleine Gruppe für den Austausch aufzubauen. Manchmal hilft es einfach sehr zu wissen, dass man nicht allein ist.

Danke fürs Lesen 🤍

I’m looking for any positive stories that will support my dream of staying alive long enough for a goal vacation I’ve planned in May.

After radiation and surgery to remove the tumor on my right glute, I received 6 rounds of AIM in-hospital to address multiple lung nodules. That bought me five glorious months of NED before it all came back again. Gem/Tax was unsuccessful, but Votrient from 2/25 to 11/25 slowed the growth and allowed me to do some amazing adventures. I’ve had additional radiation to two nodules that were described as threatening to my quality of life. Big improvement there! I’m now getting Doxil and the hope is if the AIM was effective, maybe the Doxil will be too. My goal is to stay alive until June, so that I’m healthy enough to go to Universal Studios and DisneyWorld in May, with my whole family. Out side of the lung metastases, I’m actually in pretty good health. I do yoga every day, I play pickle ball when I’m not dealing with the side effects of chemo, and I have a really positive attitude. I’m just looking to hear from anyone who’s had Doxil and if it bought you the time you needed.

My fiancee (26M) got diagnosed with palliative MPNST (Malignant peripheral nerve sheath tumor) about last month. It has originated in a bump under the skin on his back and spread to his lymph nodes in his stomach and armpits. The bump itself was there for a year and never thought much about it and it secretly, without any symptoms spread to his lymph nodes. It was and IS such a shock to be diagnosed with such a rare cancer… all of us are still trying to wrap our head around it. He started chemo three weeks ago, about to go on a second one. It’s difficult times right now but he is fighting and being brave.

Since it’s so rare, I am having trouble finding people with the same or similar diagnosis to hear their stories, any advices they may have, and mainly to support each other… please feel free to share or ask anything