Understanding Ewing Sarcoma
- Keiran Smart was diagnosed with Ewing sarcoma when he was 14 after suffering from a persistent pain in his leg that his parents and teachers originally assumed was growing pains.
- The term sarcoma is used to describe more than 70 rare cancers that begin in the bones and the soft tissues, such as muscles.
- One of our experts says “most sarcomas do not cause many of the symptoms that may be associated with other cancers.” But a slow-growing, painless mass is generally the main symptom of sarcomas. She says “it's important that patients who do have symptoms are not dismissive of them.”
- Ewing sarcoma most commonly begins in the leg bones and pelvis, though it can occur in any bone. This disease can develop at any age, but it is more common in children and teenagers.
- If you're a cancer warrior in need of some inspiration, check out our story on Lilly Bumpus the Ewing sarcoma survivor who broke the Girl Scout cookie sales record for most boxes sold in a single season.
Kieran was an avid soccer player when he first began noticing a persistent pain in his leg at the start of 2022. Sadly, the pain got so bad he had to give up the sport. Even still, his parents and teachers assumed his suffering was the result of something most typical for a teenager growing pains.
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From then until August, Kieran was in and out of the hospital. Doctors discovered he had a “high infection level,” but they were struggling to figure out why.
“After an MRI confirmed it was his pelvis, he was operated on in the middle of August,” Leanne said. “They went in through a C-section, drilled into his bone and cleaned it all out but he wasn’t getting any better.”
Further testing on the then 14 year old finally revealed the truth in September 2022: Ewing sarcoma. For treatment, he’s undergone 14 rounds of chemotherapy and radiotherapy. Kieran has handled everything so well, but life certainly hasn’t been easy.
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“Kieran’s reaction to his diagnosis and health journey has always been to just get on with it and deal with it,” Leanne explained. “He’s been an absolute trooper. A couple of times he has asked ‘why me?’ and he’s allowed to say that.”
With active treatment behind him, Kieran and his family are looking forward to a smoother road ahead. They’re also hoping his story can educate the masses about this rare type of cancer.
“We’re now past the final chemotherapy appointment which was last week and we’re now on to rest days,” Leanne said. “It has been tough. People don’t understand… We want to make others aware of what this cancer is.
“I’m glad we got there before it was too late. It could have spread to more bones and to his lungs but they think they caught it in time. Hopefully, we can move on but you never really move on. After treatment, you’ve got a lifetime of check-ups and appointments.”
To learn more about Kieran’s story or donate to the family’s fundraiser, clink the link here.
What Is Ewing Sarcoma?
Ewing sarcoma is a type of sarcoma a term used to describe more than 70 cancers that begin in the bones and the soft tissues, such as muscles. This diverse group of diseases is rare. Sarcomas only make up about 1% of tumors in adults and just over 10% of tumors in children.
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The main symptom of sarcomas is generally a slow-growing, painless mass. But, as we saw in the case above, symptoms can be hard to detect because soft tissue sarcomas are typically painless and bone sarcomas are sometimes mistakenly diagnosed as orthopedic injuries.
"Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers," Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, told SurvivorNet in a previous discussion. "A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. It's important that patients who do have symptoms are not dismissive of them."
Looking at Ewing sarcoma, more specifically, the Mayo Clinic defines this type of sarcoma as “a rare type of cancer that occurs in bones or in the soft tissue around the bones.” It most commonly begins in the leg bones and pelvis, but it can occur in any bone. The disease can develop at any age, but it is more common in children and teenagers.
Signs and symptoms of Ewing sarcoma include:
- Pain, swelling or tenderness near an affected area
- Bone pain
- Unexplained tiredness
- Unexplained fever
- Unintentional weight loss
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Don’t hesitate to make a doctor’s appointment if you or your child ever experiences any of the above symptoms. Even if you simply notice a change to your or your child’s health that concerns you, it’s never a bad idea to see that it is properly addressed by a medical professional.
Inspiration for Ewing Sarcoma Warriors
Here at SurvivorNet, we talk to many cancer survivors. And that means we get to shares inspiring stories all the time. Ewing sarcoma survivor Lilly Bumpus’ cancer journey is one such tale.
Lilly was born with Ewing sarcoma, so her life was a battle from the start. All before she turned one, the brave little warrior had intense rounds of chemotherapy and surgery to remove some bones from her chest wall.
Thankfully, those efforts were successful, and she's still in remission today. Unfortunately, however, chemotherapy at such a young age left her with lasting side effects like bone deformation.
But that hasn’t stopped her from reaching for the stars and achieving her goals. In 2021, the dedicated Girl Scout sold more than 32,000 boxes of Girl Scout cookies. Not even a global pandemic could stand in the way of her breaking the record for most boxes sold in a single season.
"My favorite thing about Lilly is that she never gives up," her mother, Trish, told SurvivorNet. "So, Lillybug got to 10,000 boxes one week into Girl Scout cookie season. Never, ever has that happened. So we went from there. I then approached Girl Scouts and said, 'What happens now if she sells 20,000 boxes?' And they said, '20,000 boxes, yeah, okay.' So we said, 'Game on.' So then we sold on and sold on, and she got into 20,000 boxes."
"And then we went to 32,000," added Lilly.
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