Woman Gets Preventive Double Mastectomy and Then Learns the DNA Testing Was Wrong: 'Just Devastating'
Nearly a decade after getting a preventive double mastectomy after testing showed she had the BRCA gene mutation, a Missouri woman learned that she did not actually have the gene.
Maureen Boesen and her two sisters have a family history of cancer — their grandmother died of ovarian cancer at age 44 and their mother was diagnosed with breast cancer at 32. So the three siblings all entered in a university study at ages 3, 5 and 7 to see if they had the BRCA gene mutation, which indicates a high likelihood of developing breast and ovarian cancers.
They were told they could learn the results when they turned 18.
“We felt empowered to be able to find out,” Boesen told KSHB in Kansas City.
The siblings waited until they were 21 years old, and then learned that Boesen and her sister Bridget had both tested positive, while the third sister, Kathryn, did not have the gene mutation.
“It was just devastating because I knew what breast cancer and ovarian cancer can do to a family. You know, my first question out of my mouth was, is there any chance this could be wrong? And the researcher said no,” Boesen recalled.
She decided to have a preventive double mastectomy at 23 to reduce her chance of developing breast cancer, which meant that she wasn’t able to breastfeed any of her three kids that came a few years later. The gene mutation also meant that Boesen was at a high risk of getting ovarian cancer.
“And so the right thing to do, and what the doctors recommend, is to have a complete hysterectomy by the age of 35,” she said.
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So last year, Boesen, now in her early thirties, moved forward with that plan. The first step was to get tested for the BRCA gene again, at the request of her insurance provider. But the test results were a shock.
“I was at work, and the first thing [the doctor] said was, we need to talk. And my heart just sank. And she said, ‘You’re negative!’ and I just started bawling,” Boesen said. “I was angry. I was regretful. I was happy. I was sad. I so desperately wanted to feel relief, ‘Oh, thank God, this is the best day of my life,’ but it wasn’t,” she said. It was just devastating.”
“I wish what I had been told was, if you don’t trust it, get another test. But that’s not what I was told, and my life could have been so different,” she said, tearing up. “My life has been great, I’m incredibly fortunate, I’m blessed. But it just could have been different.”
The university that initially told Boesen that she had the BRCA gene is currently retesting her DNA. She expects it to be negative, but if it comes back positive, “I don’t even know” what she would do, Boesen said.
