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Como
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Megan was 12 years old, an active student-athlete, and an enthusiastic member of her cheerleading squad when she first started experiencing what she described as a “weird zing” of pain in her right shoulder. Over the following years, she saw multiple doctors who attributed the sensation to adolescent growth, frozen shoulder or sports-related injuries. But the pain never went away.
By her sophomore year in college, Megan’s debilitating pain was only getting worse — to the point where she could no longer sleep through the night — despite years of X-rays, physical therapy and prescription painkillers.
"I didn't feel like I was being listened to when I described the pain and symptoms," said Megan. "Doctors assumed a young, healthy woman with pain probably just had a bruise or something. Not cancer."
It wasn’t until a physical therapist accompanied Megan to a doctor's appointment and insisted on an MRI that Megan got her answer: the true cause of her pain was a soft tissue tumor the size of a tennis ball in her shoulder. A biopsy confirmed it was synovial sarcoma.
What is synovial sarcoma?
Synovial sarcoma is a rare soft-tissue cancer that typically presents as a painful lump around the knee, hip, ankle or shoulder, most commonly affecting people under age 40.[1,2] But because the range of symptoms can mimic other conditions, synovial sarcoma is often misdiagnosed.
Symptoms may include a painless lump underneath the skin, sudden sharp pains and an area of swelling.[3]
Coping with her diagnosis
Early diagnosis of synovial sarcoma is crucial, as it can significantly improve treatment outcomes and survival rates. However, if the disease has metastasized (spread) by the time it is diagnosed, the five-year survival rate for patients is approximately 20%.[2,4]
While Megan’s diagnosis was devastating, she felt fortunate that — despite the years-long diagnosis journey — her tumor had not metastasized. She began treatment immediately with Dr. John Charlson at the Medical College of Wisconsin, a specialized sarcoma medical center. It was a grueling regimen of chemotherapy, radiation and surgery, but Megan has now been in remission for five years.
"During my treatment, I had scans with Dr. Charlson every three months for two years, then every six months for three years," said Megan. "Recently, I've graduated to yearly scans, which rocks."
Now determined to raise awareness of this devastating disease, Megan offers this advice to others:
"This rare, devastating cancer predominantly often affects young adults, like Megan, but no new, effective treatments have been introduced in over a decade," said Charlson. "Sarcoma treatment centers have the expertise and resources necessary to provide comprehensive, personalized care for patients with synovial sarcoma."
This Sarcoma Awareness Month, visit FlagSynovialSarcoma.com to learn more.
Flagsynovialsarcoma.com is provided by Adaptimmune Therapeutics, a company working to redefine how cancer is treated through personalized medicines that use a patient's own cells to fight their cancer.
This sponsored article is presented by Brandpoint.
