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home : lifestyle : health   April 29, 2016

10/3/2013 11:17:00 AM
'Rare' cancer affects three young women in Illinois Valley


NewsTribune photo/Scott AndersonBrianne Simpson and her mom Sue of Ottawa discuss Brianne’s synovial sarcoma. She was diagnosed in December 2012 and now is cancer-free after surgery and a rigid therapy of radiation treatments.
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NewsTribune photo/Scott Anderson
Brianne Simpson and her mom Sue of Ottawa discuss Brianne’s synovial sarcoma. She was diagnosed in December 2012 and now is cancer-free after surgery and a rigid therapy of radiation treatments.
Tom Collins
NewsTribune Senior Reporter



Brianne Simpson no longer is angry with her doctors — she’s too grateful to even be alive — but she chafes a bit when she remembers their dismissive explanations for her balky knee.
The 19-year-old Ottawa woman still was in high school when her right knee began stiffening and caused her to stumble and fall. Her doctors, however, shrugged it off as teenage clumsiness. Take an ibuprofen, she was told, and go see a physical therapist if it continues.
It wasn’t until Brianne and her mom Sue insisted on another MRI (the first ones had come back negative) that doctors finally spotted something worrisome behind the knee. Brianne immediately was dispatched to a Chicago specialist and even he didn’t think it was cancer.
Brianne said she still was groggy from anesthesia when her oncologist walked into the recovery room and explained that the growth they extracted, 3 centimeters in length, was in fact a rare disease of the nervous system called synovial sarcoma.
“I just nodded at everything he said until he left,” Brianne recalled. “Then I looked at my mom and said, ‘Does that mean have cancer?’ She said, ‘Yes.’ And it was scary.”
Sue Simpson was scared, too. She’d never heard of synovial sarcoma.
“Up until last December, we couldn’t even pronounce it,” she said. “We had to write it down. Now, it’s an everyday word for us.”
Synovial sarcoma is a rare malignant tumor originating in soft tissues, often in the limbs of young people, explained Brianne’s physician, Dr. Terrance Peabody, chairman of orthopaedic surgery at Northwestern Memorial Hospital in Chicago.
“The name ‘synovial’ is a bit misleading as it does not begin in the joint but usually is found in muscle,” Peabody said. “There is no known cause although the tumor cells themselves have a few genetic rearrangements while the patients as a whole do not.”
Brianne was diagnosed shortly before Christmas 2012 and now is cancer-free. She’s in her second year at Illinois Valley Community College. She is deciding whether to be a teacher or social worker and has led a Relay for Life team.
She underwent 33 radiation treatments, giving her plenty of time to absorb what little is known about this 1-in-4-million pediatric disease. She readily agreed to release her records and a tissue sample when doctors suggested she allow researchers to study her case and see if they can unlock clues to its origin and cure.
“Sarcoma is a forgotten cancer,” said Brianne, who must undergo quarterly scans to make sure it doesn’t come back. “Nobody ever thinks about it. No one ever realizes it’s out there. There’s no awareness for it.”
Synovial sarcoma is rare, but she’s not the only victim living in the Illinois Valley area. Dalton Ambler of Earlville and Cora Peters of Walnut also are battling synovial sarcoma.
Cora and Brianne didn’t know about each other until St. Bede students surprised Cora with the funds to make her dream trip to Hawaii at a Bureau Valley High School/St. Bede football game. Cora was first diagnosed in late 2009 and was in remission until early 2011.
David Peters, Cora’s father, said his family is waiting to hear from an East Coast clinic that may be willing to try experimental treatments on Cora, who’s “feeling pretty good right now.”
“It is very surprising,” David Peters said of having three cases in North Central Illinois. “Cora was diagnosed in November of 2009 and at that time we were told there about 900 cases a year, in adults and children.”
Besides the disease’s rare (or not) occurrence, there are other “facts” about the disease that don’t altogether jibe with Brianne’s experience and observations.
It’s a pediatric cancer, but she was 17 and almost an adult when the symptoms materialized. The disease also is more common in boys yet two of the three local patients are women and most of those she’s contacted online are, as well.
Then again, Brianne’s diagnosis was a learning experience for all concerned. Even after doctors spotted the mass behind her right knee, they assumed it was a benign growth — an assumption not helped by a failed biopsy.
Doctors had tried to extract material for cancer testing but the mass was attached to a nerve ending and Brianne writhed in pain; at that point, the decision was made to extract it and worry later about what it was.
“Dr. Peabody was very sure it was not cancer,” Sue said. “We were very, very surprised come December to find it was cancer.”
The growth turned out to be in the “intermediate stage.” Another 2 centimeters and the growth would have been considered major — and harder to treat.
“I got lucky — very lucky,” Brianne said.
Peabody acknowledged that the prognosis with synovial sarcoma is “very variable.”
“In some cases the tumors are reported to be present for many years,” he said. “Others behave much more aggressively metastasizing to the lungs and more rarely lymph nodes.
“For large tumors, the treatment involves chemotherapy, surgery and at times radiation therapy,” he said. “Smaller tumors are often managed by surgery and radiation alone. The prognosis is good for small tumors and less favorable for tumors greater than 5 centimeters in size.”
Brianne will be under close watch for years to come. Each quarter she can look forward to a scan, not of her knee — the spot that was excised will be scanned once a year — but rather of her torso. The disease can spread and doctors are most concerned with what’s above the knee.
“It’s a different animal,” David Peters remarked. “The first place it likes to travel to is the lungs and then towards the spine.”
Sue Simpson, for her part, is simply grateful to still have her daughter.
“So much has changed,” she said. “We realize how lucky we are.”
Tom Collins can be reached at (815) 220-6930 or courtreporter@newstrib.com.












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