Last year, Elisha Cooke-Moore made the hardest decision of her life: After doctors said genetic tests revealed that she was at risk for aggressive breast and ovarian cancers, she says she followed their recommendation and underwent surgery to remove both her breasts and her uterus.
Based on the genetic tests, the Gold Beach, Ore. resident says she had been told she had MLH1 and BRCA1 gene mutations, as well as Lynch syndrome, which together gave her a 50% chance of developing breast cancer and an up to 80% chance of developing uterine cancer. Based on those results, she went through with a double mastectomy and a hysterectomy.
After the surgeries, however, she was unhappy with the results of her mastectomy and reached out to a lawyer, who suggested that she see another doctor about breast reconstruction. After examining her case file, the new doctor informed Cooke-Moore that her genetic test results were actually negative, says Christopher Cauble, Cooke-Moore’s lawyer. She called the lab to confirm, and felt her world crash down when she learned that the doctor was right: The operations that had pushed her into early menopause, forced multiple follow-up surgeries, and left her with post-traumatic stress disorder were likely unnecessary.
“I’m permanently damaged,” she told TIME this week. “No amount of money will ever fix what they’ve done to me. Never.”
Last week, the 36-year-old filed a $1.8 million lawsuit in Curry County Circuit Court. The suit names Curry Medical Practice and Curry Medical Center, where the procedures were performed, as well as several health professionals who work there and were involved in Cooke-Moore’s treatment, including her October 2016 double mastectomy.
Curry Medical Network did not immediately respond to requests for comment on behalf of itself and its employees.
Cooke-Moore underwent genetic testing because both her mother and grandmother had cancer. Despite test results that she says clearly show no clinically significant mutations, doctors told her she carried an MLH1 gene mutation and had Lynch syndrome, both of which increase the odds of developing colorectal, uterine and ovarian cancers. (Lynch syndrome does not have a clear bearing on breast cancer, but the lawsuit alleges that members of Cooke-Moore’s care team told her it could raise her risk.) Cooke-Moore says she was also told she had mutations in the BRCA1 gene, which are linked to a higher-than-average risk of breast and ovarian cancer, though the lawsuit claims she did not.
Cauble says it’s still unclear how and why doctors misread the results. His guess, he says, is that doctors misinterpreted a line in the results, which said that there were “variants of uncertain significance” associated with the MLH1 gene. (Variants of uncertain significance is an often-used term in genetic testing that means it is not clear if the variations are or are not associated with cancer.) “The explanation to me is that everyone has some kind of gene mutation, but these gene mutations do not constitute a positive test,” he wrote in an email to TIME.
This kind of genetic testing has become far more common in recent years, though it’s still only recommended for people, like Cooke-Moore, with a strong family history of heritable cancer. Not all doctors recommend it, however, because it does come with the risk of false positives, which may cause people undue emotional stress or unnecessary procedures. Then there’s the risk of the results being misinterpreted altogether, as Cook-Moore says happened in her case.
Cooke-Moore says the pain — both physical and emotional — has been some of the worst of her life, and she wants those responsible to be held accountable. “I will not stand down,” she says.
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