There’s a rare and devastating cancer affecting young adults: One woman’s tips on how to cope with a difficult diagnosis
Posted: August 01, 2024 | Word Count: 726
Sponsored by Adaptimmune Therapeutics.
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:
- Trust & Advocate for Yourself — You know your body best. If something feels wrong, trust your instinct and keep pushing for answers. "It's important to be forthcoming with your providers. Ask questions, even if they seem silly. Speak up if their perspective doesn't align with your experience. And don't be afraid to get a second opinion," stresses Megan.
- Find the Right Resources — Synovial sarcoma is a rare cancer. Not all doctors know what to look for, how to diagnose it or the best options for treatment. Therefore, seeking diagnosis and treatment from medical professionals and interdisciplinary teams with expertise in sarcomas is important. "I was lucky to live close to a medical center that specializes in sarcoma and knew how to manage my disease and treatment," Megan said. "And I'm so grateful to Dr. Charlson and his entire team for the care and specialized expertise over the last four years."
"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."
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.
- "Synovial Sarcoma." National Cancer Institute. https://www.cancer.gov/pediatric-adult-rare- tumor/rare-tumors/rare-soft-tissue-tumors/synovial-sarcoma. Accessed 17 May 2024.
- Aytekin MN, Ozturk R, Amer K, et al. Epidemiology, incidence, and survival of synovial sarcoma subtypes: SEER database analysis. J Orthop Surg (Hong Kong). 2020;28:2309499020936009.
- "Synovial Sarcoma." Moffitt Cancer Center. https://www.moffitt.org/cancers/sarcoma/diagnosis-treatment/types/synovial-sarcoma/. Accessed 18 April 2024.
- Jami SA, Mobarak SA, Jiandang S, et al. Clinical and strategic outcomes of metastatic synovial sarcoma on limb. Int J Health Sci (Qassim). 2020;14:38–43.
