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Growing up on a farm in central Florida, Paige Douglas enjoyed a unique childhood, caring for a menagerie of animals, horseback riding, even barrel racing at local rodeos.
But, when she was 10, Paige inadvertently hit her left knee while bouncing on a trampoline. Though she had no visible cuts, pain radiated up and down her leg.
Later, Paige would say, “It felt like I had a BB pellet stuck in there.”
Her knee became so sensitive that the slightest touch or inadvertent bump would “bring excruciating pain, sending me to the ground, screaming and crying,” she recalls.
Paige visited countless doctors near her home in Ocala, Florida, trying different medications, topical treatments and steroid injections. The pain persisted. After an exploratory surgery in 2001, doctors told her she had a neuroma, an area of increased sensitivity and pain that often develops after physical trauma to a nerve. They said removing it should resolve the issues.
It did, but only for a short time. Then the pain returned. Continuing her quest for answers, Paige saw more than a dozen physicians in as many years. Eventually local doctors dismissed her. “They said there was nothing more they could do for me other to prescribe pain medication,” says Paige, now 25 and married.
“I felt like no one could help me. And I couldn’t do the things I enjoyed,” she says, noting that even everyday things were challenging. “I was always fearful of someone accidentally bumping me or turning wrong and hitting my leg.”
Paige, a deeply faithful woman, prayed. “I asked God to help guide me,” she says. “I just knew there had to be someone, somewhere, who could help me.”
That someone turned out to be Peter Murray, M.D., an orthopedic surgeon at Mayo Clinic’s campus in Jacksonville, Florida. In April 2014, Paige traveled 250 miles north from her home to see Dr. Murray, who performed additional scans and a surgical biopsy on her knee.
On April 22, Paige finally received an accurate diagnosis. She had synovial cell sarcoma, a soft-tissue cancer that typically occurs near the joints in the arm, neck or leg in young patients.
“(Dr. Murray) told me he had a whole team of people in place to take care of me, and I knew I was in the right hands, at the right place, at the right time.” - Paige Douglas
“When I heard I had a malignant tumor, and one that had been there for who knows how long, an indescribable fear came over me,” Paige says. “My heart sank. But then (Dr. Murray) told me he had a whole team of people in place to take care of me, and I knew I was in the right hands, at the right place, at the right time.”
In addition to Dr. Murray, Paige’s care team included Courtney Sherman, M.D., an orthopedic oncologic surgeon; Steven Attia, D.O., a medical oncologist; Larry Daugherty, M.D., a radiation oncologist; and Galen Perdikis, M.D., a plastic and reconstructive surgeon. Experts in musculoskeletal radiology and pathology rounded out the group.
“Sarcomas are a very rare form of cancer. A majority of physicians will never see a case, or maybe see one case, in their lifetime. And because sarcomas are so rare, it’s unfortunately often missed and misdiagnosed,” says Dr. Sherman. “In this case, we were able to make this diagnosis by performing an open biopsy, with our pathology team being able to perform specialized studies and molecular tests on the tumor tissue.”
The team developed a customized treatment plan for Paige aimed at not only removing the cancer but saving her leg.
“In the past, we’d have amputated most patients’ legs," says Dr. Sherman. "We’ve made huge strides in the past 50 years. Now we’re able to save the majority of limbs with specialized surgery, radiation therapy and sometimes chemotherapy.”
Before her surgery, Paige would need 25 rounds of radiation therapy. Despite the 250-mile distance between her home and Jacksonville, Paige chose to undergo the treatments at Mayo. She made a five-hour roundtrip five days a week for five weeks. “It was hard but I wanted to maintain a sense of normalcy for my family and I trusted this team … doctors who care, show compassion, and genuinely took time to know me as a patient,” she says.
On July 8, 2014, Dr. Sherman performed a complex surgery to remove the tumor embedded deep in Paige’s knee. Drs. Murray and Perdikis followed, reconstructing her leg with tissue and muscle grafts from her calf. Today Paige has a 14” scar but complete use of her left leg.
“I could not have asked for more from Mayo Clinic,” Paige says. “My limitations are zero and I’m able to do all the things I couldn’t do before because of the pain.”
To help bring awareness to others about sarcoma, Paige created “Team Paige,” an online support group. And she is enrolled in nursing school, hoping to work in oncology.
Last fall Paige nominated the Mayo team for the Sarcoma Alliance 2015 Outstanding Care Award. According to the organization, the award is usually presented to one individual but Paige’s nomination moved the group so much that it honored everyone.
“At first I thought cancer was a death sentence for me, yet it turned out to be a blessing, the best experience of my life, and I’m so grateful to Mayo Clinic,” she says.
Watch a video sharing Paige’s story below.
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