Cancer strikes mom, 3 kids |
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Tests done 10 years ago gave wrong diagnosisPublished: Monday, May 07, 2007
Copyright 2007, The Vancouver Province, Canada |
![]() Julie Drybrough with her husband Chris, and three daughters (from left), Samantha, Trinity and Katarina. Photo: Les Bazso, The Province |
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Matsqui's Julie Drybrough thought she was doing the right thing when she got a genetic test. Only one problem: The test lied. Drybrough, 27, comes from a family -- on her mother's side -- plagued by an incurable, tumour-producing disease called von Hippel-Lindau. Fewer than 800 people in Canada have the condition, which is caused by a damaged gene. The gene produces little knots of capillaries, around which problems such as tumours and cysts develop.
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Drybrough lost her mother to VHL at 46, a maternal uncle at 29 and her maternal grandmother at 49. She had one child, Samantha, when she was 16, before showing any symptoms herself. But when she later married Chris, they decided to have children only if Julie did not have the disease or was not a carrier. They wanted to spare kids the long, painful death that Julie saw her mother endure. So Drybrough went to B.C. Children's Hospital, which did genetic testing at that time. "I was told in 1997 [it was 98-per-cent likely] that I didn't have the disease," she said. So Katarina was born just over a year ago. Trinity will soon be two. But after enduring terrible headaches in 2005, doctors discovered Drybrough had a brain tumour with a fist-sized cyst attached to it at the base of her skull. She feared the worst for her girls, but a test could not be done until after her surgery in January 2006. Then the bad news: Four months later the new, more sophisticated tests, now done at the B.C. Cancer Agency, revealed not only that she has the disease, but so do the three daughters. "The reality is they've watched their grandma die and they watched my two surgeries," Drybrough added. "They know they have it and it can't be easy for them." While physical and emotional suffering have no doubt scarred Drybrough, a persistent pain in her back may have saved her life when it tipped doctors to look for renal cell carcinoma. An often-fatal disease usually discovered too late to treat, this time had a happy ending. "I have had half my left kidney removed," she said of the "good news" surgery last November. Although three small tumours in her brain "appear to have gone away," doctors are still monitoring another on her spine. And VHL has also left her with a permanent "wave" effect in her left eye. So what is Drybrough's advice to other potential parents who have to deal with the reality of possibly serious genetically based disease? "Find [a medical professional] you trust and stay in contact," she said. And "keep up with what's current." B.C. Cancer Agency genetic pathologist Dr. David Huntsman was surprised the family didn't have a legal recourse. "We tried," replied Drybrough, "but our lawyer told us we wouldn't get anywhere." donharrison@png.canwest.com © The Vancouver Province 2007See a related story about Julie and her girls |
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