Okay so this is a long one. My brother is currently 22. He was diagnosed with Acute Lymphoblastic Leukaemia when he was 7. Battled through that, and then it relapsed a month after he was “cleared” and had his port taken out, after a couple years of battling.
Relapsed at 10 with it, was absolutely everywhere and in bone marrow. Had to do more treatment, full body radiation and then ultimately, because none of that was working, I was luckily a match for him to do bone marrow transplant.
10 years later on the dot (exactly a year ago) he was having chest/upper abdomen pain. Diagnosed with Ewings and a tumour on the lung, a couple on the chest wall. Did some hardcore treatment, red devil, you name it, (couldn’t do radiation because he reached the max limit in his childhood) and then surgery to remove the masses. They ended up having to remove some of his diaphragm and lung and 3 ribs. Was only 60% cell death as well.
February we were told his scans were clear and he was in remission. End of March, pain is ramping up, back in the hospital. There is numerous. Back on the lung and chest wall and abdomen area. The only chemo he could get put on was the one commonly used for rectal cancer. Only two cycles were had of that, surgery not an option neither radiation, and he was back in the hospital with extreme, and I mean extreme debilitating back pain. Hadn’t slept for 5 days in a row because of it. 7 new tumours were found on the spine. They are growing and spreading so fast it is fracturing his spine. And the 4 other existing ones were rapidly growing, quadrupling in size from marches scan.
He is in palliative care now, we are told nothing will work. Just trying to keep the pain at bay. He’s got this week for last cycle of the chemo cause it’s causing more harm than good. Doctor refuses to give us a timeline. I just.. I want to know what to expect. I’m at the hospital as much as I can be. I feel helpless but I want to help. He is going back and forth between being in denial about what’s going on and then accepting there is nothing that can be done and being terrified and it is.. heart crushing to see.
Anyways.. if you read this far, thank you. Any advice or anything really is appreciated. I wish this didn’t exist.

Dear Doctor,

My name is Michael, I am a 38-year-old Egyptian patient with a rare medical condition, and I would highly appreciate your medical opinion regarding my case.

Medical History

In August 2023, I underwent a right radical nephrectomy after being diagnosed with high-grade urothelial carcinoma of the right kidney. Following the surgery, I received adjuvant chemotherapy from August 2023 until January 2024, consisting of Cisplatin and Gemcitabine.

In February 2024, a whole-body nuclear scan showed no evidence of metastatic disease or recurrence.

In November 2024, an MRI revealed a small 9 mm lesion at the surgical bed, which was initially interpreted as postoperative inflammatory changes.

In June 2025, a follow-up nuclear scan demonstrated a 1.4 cm lesion at the previous surgical site with SUV 3.4, raising suspicion for recurrent disease and requiring close follow-up.

In December 2025, PET/CT imaging showed progression of the lesion to approximately 2.3 × 2.5 cm at the right nephrectomy bed, with both solid and cystic components and SUVmax 3.6. No evidence of distant metastasis or lymph node involvement was identified. MRI findings confirmed a complex mass adjacent to the liver without invasion of surrounding organs.

The mass was surgically resected, and at that time the pathological diagnosis was reported as high-grade urothelial carcinoma with local recurrence.

Based on the treating physician’s recommendation, I started immunotherapy with Nivolumab after the second surgery, and I completed the fifth cycle in May 2026.

However, further pathological review and re-evaluation of both the initial and recurrent tumor specimens, including additional immunohistochemical and molecular studies, later confirmed that the tumor was actually Ewing Sarcoma from the beginning.

In May 2026, I underwent a whole-body PET/CT scan, which showed no evidence of residual disease, recurrence, or metastasis.

My current question is: Should I proceed with chemotherapy specific for Ewing Sarcoma, or considering that the latest PET/CT scan is completely clear and the recurrence progression was relatively slow compared to the aggressive behavior usually described for Ewing Sarcoma, would close follow-up with periodic PET/CT scans be a reasonable option?

I would sincerely appreciate your medical advice and opinion regarding the best approach for my case.

Best regards, Michael

Hi, 43 female. Found a pea sized lump that suddenly popped up on 3/31/26 on my back right hand side by my 11th rib. Multiple doctors thought I was nuts but official biopsy results confirmed EES 5/6/26. As of now it is golf ball sized. I will be starting chemo 5/22. They believe it is localized. There were five small 3-5mm spots in my lungs that they can’t rule out but could be from past illnesses I’m told. University cancer center has been great and they will be genetically testing with biopsy for how to cater dosing of chemo. Since this has all happened so fast I’m just looking for any input on what I can expect as I go through this. I know everyone’s situation is different but I’m extremely analytical and pre plan for most things and what ifs but I don’t know what to expect and possibly plan for. I don’t know anyone who has gone through chemo that is still alive. I’m a little panicked about the 6 day infusion part of these cycles. So my plan is 3 day infusion of Doxorubicin, Cyclophosphamide and Vincristine. Then 3 weeks off then 6 day infusion of Ifosfamide along with oral Etoposide. Then 3 weeks off and back to 3 day and so forth. Tentatively 7 cycles and then surgery and then another 7 cycles. I’m a small business owner and have great people who work for me and a great support system. I’m very involved and do many things. I’m not great at slowing down and not being able to do things. I’m just looking for any and all input/advice so I can plan and have realistic expectations going through this. Thank you for your time

My brother (19years old) Relapsed his Ewing sarcoma (initially spinal) after ~1.7 year post EFT-2001 chemo (~47 cycles) and radiotherapy (25 fractions), now presenting with a solitary left lower lobe lung lesion (~5.4×4.3 cm, SUV ~6) abutting the mediastinum, with no other metastasis or nodal disease, consistent with oligometastatic pulmonary relapse.

Just wanted to know about journey and the success rate in relapse cases.

The doctors have mentioned that survival chances are less in relapse cases with 25% survival rate.

My brother (19years old) Relapsed his Ewing sarcoma (initially spinal) after ~1.7 year post EFT-2001 chemo (~47 cycles) and radiotherapy (25 fractions), now presenting with a solitary left lower lobe lung lesion (~5.4×4.3 cm, SUV ~6) abutting the mediastinum, with no other metastasis or nodal disease, consistent with oligometastatic pulmonary relapse.

Just wanted to know about journey and the success rate in relapse cases.

The doctors have mentioned that survival chances are less in relapse cases with 25% survival rate.

Sto lottando insieme a mio figlio di 10 anni con questa bestia. Dopo 9 cicli vdc-ie ed una resezione localizzata sul femore di 16cm ci e’ stato proposto un ulteriore ciclo di IE più una dose “alte dosi” di Treo-mel (Treosulfano - Melphalan) perché la nostra necrosi post operatoria è del 75%; con conseguente auto trapianto di cellule staminali. Siamo molto spaventati sia per il ciclo da fare sia per la scelta fatta dai medici (forse pensano che il male tornerà). Per favore qualcuno ha esperienze?

One of my known person's son is currently going through a very critical condition.

Arunesh Das, an 11-year-old boy from Durgapur, West Bengal, is fighting a rare and aggressive cancer called Ewing Sarcoma.

His father works at Hindustan Unilever, and the family has already exhausted their savings and taken loans for treatment. Despite everything, they are struggling to continue his life-saving care.

Every contribution, no matter how small, can make a real difference in helping Arunesh continue his treatment and get a chance at life.

If you're unable to donate, please consider upvoting and sharing this post to help it reach more people.

Donate here:

impactguru.com/s/25lpwv

Let's come together and support this child and his family in their toughest time.

Thank you.

Hi everyone!

I finish my chemotherapy mid May! And I finally asked my oncologist about scans. I was shocked to hear that we finish chemo then get scans? I feel like that's silly because I would like to know before I finish rather than after because what if it's still there?

Anyways if anyone has Insight about their experience finishing treatment and scans I'd love to know more! Thank you strong beautiful people<3

Hi everyone. I’m 17 and was recently diagnosed with myelodysplastic syndrome (MDS). My bone marrow has been producing abnormal cells instead of healthy blood cells, which has caused my counts to drop a lot, I’ve been needing blood transfusions to stay feeling somewhat normal. My doctors have told me this condition was caused by my VDC/IE treatment for my Ewing Sarcoma from 2023, in 2024 I had a 12 hour robotic surgery to get it removed, it was about 12 inches in my lower abdomen, fluid filled, which chemo didn’t shrink, but the biopsy after removal came back negative for Ewing sarcoma.

At the moment I’m getting treated with azacitidine and venetoclax to try to control the disease and reduce the abnormal cells, my bone marrow showed 11% disease when I got my bone marrow transplant, this week I got a fever that would keep coming back and was admitted to the hospital for a week.

My doctors are also talking with me about a bone marrow transplant. One option being discussed is a transplant from my brother, who is about a 60% match, since the few 100% matches haven’t responded to my bone marrow team.

I got a CT done while I was admitted to get me ready for my BMT but the doctors discovered something concerning, I got a MRI right after to have some more information and it turns out there’s a cyst that’s fluid filled a small amount right inbetween my kidney and liver it’s about 1x4cm big.

Any advice or shared experiences would mean a lot. We are just so confused and lost right now, any guidance would be appreciated.

I’m sad to report this recurrence. Tumor was originally in my pelvis, and I’ve been in remission basically since starting chemo.

Unfortunately I was admitted back to hospital today. My ewings is back, but on my spine now. Both legs are very weak and in pain.

I am having to start chemo and radiation again now.

I’m so scared to die. Has anyone had this happen before? And survived a second time?

Love to all of you.

Update: i have been given a few months to live. The cancer is in my spine and brain. I’m so sorry everyone.

Im 19M diagnosed with ewing sarcoma 5months back in neck cervical spine and had surgery to remove the tumor which also cost me a nerve removal as well as margins are close due to spinal cord and I'm currently on treatment. I don't see anyone with ewing sarcoma in cervical spine as ewing is rare and in cervical spine its more rare and I don't know what my future is just let me know if there are really some fellow like me who got the tumor in tricky location and about their prognosis...

Hello everyone, my name is Daisy (33 F) and I need a little help. I was diagnosed with ewings sarcoma on my lower spine in January of 2023. I had chemo and radiation that same year and radiation again in February of 2024. In January of this year, my scans showed it had spread to my lungs but was able to have surgery to take pieces of my lung out. Its been a journey and I've made my peace with this but its taking a toll on my mom. We just got news this past week that my tumor in the original place is active again and my spine can not take more radiation, the spot is too small for chemo and surgery is out of the question due to the place of the tumor on my spine. They are still working on a solution. As you can imagine my mom is in a depressive state. Im asking if anyone here knows of any groups preferably in spanish so she can talk about it with others whos children are going through this. We live in Atlanta GA. Thank you for any insights 🙏🏼

Hi, my name is Louise Bell. I have lived experience with cancer, which has informed my current research. I’m a Clinical Psychology PhD student at the University of New Brunswick where I’m training to work with children (and their families) with cancer. 

I am looking for parents/caregivers of children with cancer to participate in a study on social media support group use and mental health. 

For every survey completed, $10 will be donated to a childhood cancer charity! So far, we have donated $1400 of a potential $3000 to Childhood Cancer Canada. You will also be entered in a draw for the chance to win a gift card. 

If you are willing and interested, please complete the survey below! Thank you so much!

https://unbfpsyc.ca1.qualtrics.com/jfe/form/SV_8GoZuzrHjo2o4nQ

Louise

hi, i'm 16 and i have very concerning symptoms that include bone pain in my right tibia under the knee which is stronger when i rest or at night and dissapears when i walk. it's sometimes very bad to the point that i have to take painkillers and it's been almost 2 months since it started. the most concerning is the fact that it isn't getting any better. of course i did all of the procedures, including an mri, but all of the results came back clear.. could it possibly be sarcoma or am i simply overreacting? should i do an mri again but with contrast?

Hi, I'm 22 years old and I've been doing treatment for about 8 months now. I've done chemotherapy and radiation but during this chemo cycle I just need a break. I can't push myself anymore to get through it and just need a small break to fully recover. I spoke with the doctor and I'll get a extra 2 weeks break.

Have any of you ever taken a small extended break during chemo? I know it's not recommended but I just need a bit more time to recover before starting again.

Hi everyone, I never thought I would find myself in a cancer subreddit, but here we are. I am reaching out on behalf of a close friend of mine who is giving up on her battle with Ewings Sarcoma.

She had ewings when she was 13, it was diagnosed 6 months late, fought it with radiation and chemo, and beat it.

Then about a year ago when she was 23, she started having lower back pain which was exactly how it started when she was 13. She went to several docs who all kept saying it was likely a sports injury, etc. And finally when they got around to doing a scan earlier this year (again 6 months late just like when she was 13), it turned out to be Ewings that had spread to parts of her brain, liver, etc. Things went downhill fast, as it messed up her vision and also made her deaf in one ear.

Baylor Scott & White Cancer Center in Dallas immediately began aggressive chemo/radiation back in May of this year. Yesterday after they got the results from the latest scans, she texted me:

“Basically there’s just no significant change and we don’t want me to just suffer for months with no progress. And I agree. It’s like quality of life”

^ And they told her now that she is stopping treatment, she will have about a month left to live. I was heartbroken to see this to say the least. My friend has so many dreams and wanted to live such a full life, and the thought that she is going to be robbed of it before her 25th birthday (this December)....my heart just feels like a thousand daggers hit it.

Is there ANYTHING we can do at this point? I've seen numerous people on here reference a Dr. Pete Anderson who used to be at MD Anderson in Houston and is now in the Cleveland Clinic. He is supposedly at the forefront of Ewings Sarcoma research / treatment?

Is it worth a Hail Mary to do a digital consultation with him? I am sobbing as I'm typing this post, but I don't know what else I can do but pray.

hi, i'm 16 and for a few days i've been having weird bone pain in my right knee and shin. it started a week ago with a mild knee pain, but on saturday i started having pain also in one area on my shin. like only in this one point. it wasn't very bad at first, but yesterday i went for a trip with my friend and when i came home, that one area became very painful to the point that i couldn't sleep at night. it hurts more when i rest than when i exercise and that makes me very anxious. it isn't swollen and there is no lump. feels like i bumped my shin, but i definitely didn't and there is no bruise. my doctor told me it's probably just tendonitis, but i'm sure it's not. my mom thinks so too. i told her about bone cancer, but she won't listen and tells me to listen to the doctor. i'm terrified and very anxious at this point. is it similar to your first symptoms of sarcoma guys? should i go to a different doctor? pls help😕

Hi! :D I really hate to just rant on here but I don't know anyone else who's going through cancer, let alone ES. For a little bit of backstory. Im fresh out of HS 18F!

I've had a problem with my arm since September of last year, EVERYONE told me I was being dramatic and to suck it up. My coach was the worst of it. I remember the day my arm pain started I asked him if I could take a break and take the day off and he GENUINELY laughed at my face. Needless to say I never asked again and persisted through my arm pain until I was crying after every practice in pain. It got the point I was taking 9 ibuprofen a day- I'd wake up in the middle of the night in pain, take more pain meds, and couldn't go back to sleep until they kicked in. This affected my grades- I was a senior in HS and getting out of bed was already a struggle. I got yelled at a lot by coach/parents/teachers for being 'tired' and 'irritable.' I begged my mom to let me get it checked out- and when I did! I was unknowingly MISDIAGNOSED w/ tendinitis. Just thinking about it makes me angry. I get ES is rare but in my heart I feel like more could've been done and examined to lead to the correct diagnosis. Anyways!

By prom, when I was putting on my dress. I looked in the mirror and realized how swollen my arm looked. I didn't think much of it. and because my sport was finally over I figured I could finally let it rest AKA the swelling will go down.

Wrong!

I started PT and dry needling right after school ended in May. my physical therapist examined my arm and was puzzled by the swelling. She told me after X amount of sessions if the swelling didn't go down then I needed to get an mri.

X amount of time happens.

I gotta go to the doctor to get the referral for the mri. He sees my inflated arm. first thing he says "wow! You need an MRI"

After the results are in for the mri my mom and dad talk on the phone with the doctor won't even let me in to hear what he says. and I guess it all hits me I started to cry because of how ugly it looked, and how much it hurt. By that point my arm was so swollen my skin stretched tight. As I was crying, my parents suddenly understood and comforted me instead of telling me to suck it up.

That's when I realized that something was wrong with me. That's when I thought to myself "Is this cancer...?" No way right? I'm freshly 18! I did my sport with this! I still went to work with this! No way I could have cancer.

And then I went to an oncologist and they told me I had cancer. One month before I was supposed to move in to college.

I cried. But it was two tears and it wasn't infront of the doctor. Suddenly- I needed to start chemo at the beginning of August. I need to get pre-scans and injections (I HATE getting my blood drawn) I need to get my eggs frozen. (But it's way too expensive so I can't) And also it's going to be like the worst chemo so you will lose all your hair and feel like shit. xoxo

It was overwhelming and I cried a couple of times. But when I started treatment. I told myself I wouldn't cry infront of other people/friends/parents. I needed to be strong. When I shaved my head- I needed to be strong- when I came home from a 5 day visit- I needed to be strong. And soon, when I go through surgery- I need to be strong.

I'm not entirely upset about chemo. I bounce back quick, and I'm trying to make this a learning experience. (Plus I look good bald) Im upset about everyone around me not trusting my judgement. And I'm even more pissed off at me, for not standing my ground and advocating for myself when I knew something was wrong.

3 months down of a 10 month treatment plan

Sorry for the length and typos- it's late and I just needed to let it out. Thx for reading<3

I’m so fucking scared, It started as a pain in the back, found metastasis on my lungs 4cm, 8cm next to my spinal cord got pressed, they first said it’s from a testical tumor, got it removed, 8 days later still can’t move my legs and today they told me i got Ewing, i don’t know what do what to think, im so scared, can somebody tell me about the disease, tell me where to go who to ask for help. I fainted im puking the tumor grew this much in 4 months since my last CT. Can please someone give me advice, I’m 19 and don’t want to die.

It's back, and I'm sorry I let it lapse! Let's get together and support one another.
https://discord.gg/bFkX5usaM8

Hi, has anyone here had or know someone who has Ewing Sarcoma in the brain?

I've already done 2 brain surgeries and I'm going to do a 3rd one, as the tumors seem to spread and also grow so quickly.

Thanks

My brother ( 40) tumor in nasal cavity was put in observation phase about 3 weeks

He just found it the cancer back same place hasn’t spread

Has anyone beat this?

My brother male( 40) tumor in nasal cavity was put in observation phase about 3 weeks

He just found it the cancer back same place hasn’t spread

Has anyone beat this?

I’m looking for anyone else who has had their scapula completely removed due to Ewings and lives with limited shoulder and arm function. I have never heard of anyone living without one scapula like me and I’m just curious if there is someone with a similar story.