Sarah Durham said she knew it was time to undergo a radical hysterectomy when she went into full-fledged panic mode every time she was scheduled for an ovarian cancer screening.
It wasn't a quick burst of fear; it was a full week of frantically wondering whether this would be the time that doctors gave her a death sentence, due to her family history of cancer.
The mother of twin 9-year-old girls decided that her ovaries were no longer worth that panic.
"I was freaking out," Durham, 43, told ABCNews.com. "I was worried this is this going to be the appointment. This is the time I go in and he tells me I have ovarian cancer and it was too late."
Durham's family history was riddled with cancer. Her father died of a brain tumor. So did her mother, Magi Durham Ziff, who beat colon and endometrial cancer before being diagnosed with a brain tumor in 2010. She died the following year.
Realizing that Magi's three cancers were possible indicators of Lynch syndrome, a series of genetic mutations that predisposes carriers to several cancers, doctors told Durham and her mother to see a genetic counselor before Magi's death. They concluded that Magi likely had Lynch syndrome and that Durham had a 50/50 chance of having it, too.
"It was hard because I'm a mom," she said. "It wasn't so shocking, but it was more just a bummer, realizing the larger genetic impact on my daughters."
Dr. David Fishman, Durham's gynecological oncologist and director of the National Ovarian Cancer Early Detection Program at Mount Sinai Hospital, said predisposition for cancer is not always obvious, which is why it's important to seek genetic counseling.
"We now know over 20 gene mutations associated with increased risk of breast and ovarian cancer," Fishman said. "Family history is a critical component to identify people at risk."
Immediately after her mother's death, Durham decided she would go in for aggressive colon and ovarian cancer screenings and decide later whether she wanted any prophylactic surgeries. She needed time to mourn and adjust to her new genetic reality.
She started going to a gastroenterologist who specialized in Lynch syndrome at Mount Sinai. And a year-and-a-half ago, the doctor there found a polyp, or abnormal growth, that looked like Lynch, she said.
Durham wasn't as worried about colon cancer, reasoning that if caught early, it was treatable. But ovarian cancer was more daunting. Even though she was screened every six months, an aggressive cancer could grow out of control in that time.
And that knowledge prompted her to worry for a week before every appointment.
But through a nonprofit organization called Sharsheret, Durham connected with women her age who had similar genetic predispositions. One woman told Durham she had the same intense fear before ovarian cancer screenings, which prompted the woman to undergo a prophylactic hysterectomy.
"The stress of those appointments every six months felt worse to her than what it means to have this surgery," Durham said.
It was a pivotal moment for Durham, who said she didn't plan to have any more children. She underwent a prophylactic radical hysterectomy in 2012 with no sign of ovarian or endometrial cancer.
Since the surgery involved removing Durham's ovaries, she would need to rely on hormone therapy to avoid being thrown into early menopause.
"It was clear to me that it was not going to be easy," she said. "To me, the scariest part of it in some way was not really knowing what that would be like, the irreversibility of it."
But Fishman was able to determine the right hormone therapy and dosage for her. Most women need only about two-thirds the levels of hormones that their bodies made naturally to be comfortable and maintain their sex drives, he said.
Durham started using a weekly patch to get her hormones, but she shifted to a pill when a virus she couldn't shake prompted her to ask Fishman if perhaps the patch was a problem. She got better almost immediately and has been feeling good ever since.
"It's been such a long and emotional journey. I could never forget it," she said. "But I don't think if you met me you'd perceive me to be a post-menopausal woman."
Though Durham said she downplayed the surgery to her daughters, she plans to fully explain her decision -- and their cancer risk -- when they're older.
- Disease & Medical Conditions
- ovarian cancer
- endometrial cancer