Element of fear
Fear is an element the sisters say keeps some women, like their mother, from getting the care they need before it's too late.
Werber had been afraid of the financial implications of being sick, even before she knew she had cancer, her daughters said. She had recently changed insurance carriers and, ironically, had signed a waiver for coverage pertaining to gynecological issues.
Shepherd said her mother figured since she was done having babies, she didn't need to be covered for gynecological care.
For months before her death, Werber had been seeking medical help for some fairly common and benign-sounding symptoms: back pain, bloating, fatigue, indigestion. She'd been a beautiful woman, but within a few months, she developed deep wrinkles on her face, especially around her mouth, her daughters said. She seemed to be aging way too quickly.
Doctors tried to treat Werber's symptoms and misdiagnosed her with everything from a bladder infection to heart troubles and a gall bladder attack. In fact, it was while Werber was in surgery to remove her gall bladder that doctors found the cancer tumors that had grown rampant inside her body.
“I was so angry that they did not catch this because she was crying out for help,” Shepherd said. She said she wishes doctors would assume the worst instead of just treating symptoms as they come. She's also angry that ovarian cancer is so hard to detect. It can be found through various imaging tests such as ultrasound or by elevated levels of CA-125 blood markers.
Immediately after finding Werber's cancer, doctors asked to test her for BRCA gene mutations in order to determine whether she could have passed the genes on to her daughters. Just three days before her death, the test results came back positive for BRCA 1 — too late for Werber, but not for her daughters.
The sisters didn't receive their own genetic test results until a few weeks after their mother's funeral. When they did, both said they were devastated.
“It's like, you're doomed, this is your life, this is what's going to happen,” Shepherd said. “It's almost like a cancer diagnosis without the cancer.”
Shepherd and Holden are bent on raising awareness of ovarian cancer. They hope that one day the teal ribbon associated with ovarian cancer will be as recognizable as the pink ribbon for breast cancer.
“There is still no early detection of a very silent disease and nobody knows about this teal ribbon. Oh my gosh, it just makes me so mad,” Shepherd said. She and her sister have incorporated teal into their wardrobes. Holden wears a wool teal coat and has a teal ribbon charm on a necklace. Shepherd found a silver ribbon set with teal blue diamonds she wears in memory of her mother.
Knowing they carry the mutated BRCA genes, the sisters will have to decide when to have their daughters tested for the mutation.