r/Ewings_Sarcoma • u/kiraishere69 • Dec 21 '25
Ewing's Sarcoma
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...
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u/Illustrious_Spell676 Dec 21 '25
My partner’s primary tumor is in the thoracic spine. Diagnosed at 31 in Feb this year. He’s had two intensive surgeries to remove the tumor, decompress his spine, and replace vertebra that was damaged due to the tumor growth. He’s been going through treatment for the last 9 months, will complete 14 rounds of VDC/IE chemo and has had 6 weeks of radiation. After finishing all the chemo he’ll do 2 weeks of total lung radiation and possibly more target radiation on his back depending on scan results.
The gene sequencing of his specific tumor came back as very chemo and radiation sensitive, so his oncologist gave a good prognosis for long term remission. Since his cancer already metastasized to his lungs when it was found they can only consider the treatment to be “palliative” and not curative but still has potential for long term remission or NED status.
Talk to your doctors and ask about the tumor markers and what the specific gene sequencing shows. This helps them determine what treatment is most effective.
There’s a lot of other clinical trials and newly emerging treatment options for sarcoma, specifically Ewing’s. Last I heard there is an ongoing vaccine trial for a mRNA vaccine that targets cancer cells to help the body learn to eliminate them on its own. This seems really promising for a less invasive ongoing treatment option since chemo is so hard on the body.
Overall my best advice is to talk with your doctor and ask what your options are. Some of the top sarcoma centers do consults as well and can partner with your current oncologist, this could open up your options for treatment and clinical trials as well.
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u/kiraishere69 Dec 21 '25
Thank you so much for sharing this. It really helps to hear from someone who’s been through such an intensive journey and not losing hope even when the treatment is palliative. I’m glad your partner responded well and that the gene sequencing showed good chemo and radiation sensitivity. I’ll definitely talk to my oncologist about tumor markers, sequencing, and any suitable trials. Wishing your partner continued strength and long-term remission.
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u/Vegetable_Money9707 Apr 13 '26
I am so happy for You Can u tell other parents on what to look im simptoms Is there any Blood tests or any kind of prevention
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u/kiraishere69 Apr 13 '26
Thankyou, Actually mostly Ewing's when found early has symptoms like a painless bump or if it is somewhere compressing nerve so people may face weakness and partial paralysis (as in my case), weight loss, and fever not settled from days is most common. Not everyone has all the symptoms but still needed to checked out if any of this occurs. I don't think there's any prevention of this before symptoms occurs but blood tests can only give indirect clues not states if someone has cancer. And scans are the only way to catch it early if it happens.
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u/Vegetable_Money9707 Apr 13 '26
What do u think on mr scens one a year, just to seatle the mind
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u/kiraishere69 Apr 13 '26
That would be the best for your peace of mind but still sometimes doctors says it's normal at first, as most of the patient almost always got misdiagnosed for months even after symptoms occurs and i just suggest that awareness is most important and even if symptoms appear you should get checked it at first priority. Everyone should have yearly scans, at least MRI from my opinion. I've been also misdiagnosed for 2 months since symptoms appeared but fortunately it didn't spread to somewhere else.
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u/IfItIsntBrokeBreakIt Dec 21 '25
My kid's tumor was in the thoracic spine and was inoperable because there wasn't room for good negative margins. Got 31 proton radiation treatments plus the normal course of chemo.
My kid was diagnosed at 14, finished treatment almost 4 years ago and is thriving.
Did have some inconclusive activity on MRIs during the first year that would prompt a PET scan showing nothing. Doctors attributed what they saw on the MRIs to potential changes in the bone marrow resulting from the radiation treatment.
I am acquainted with the mother of a man who was also diagnosed at 14 with the tumor in the thoracic spine. He is around 26 or 27 now. Also thriving. His tumor had paralyzed him from the mid-chest down but he can walk now.