Judy Werber helped shaped the lives of dozens of babies during her career as a home day care provider in Edmond. Werber's daughters hope their mother's story will touch even more lives two years after her death. Actually, they hope her story will save lives.
Wendy Shepherd, 35, and Stacey Holden, 37, both of Edmond, lost their mother on Nov. 28, 2010, to ovarian cancer just 19 days after the cancer was found. When they learned that, like their mother, they both carry the “breast cancer gene,” they were determined they would not become victims of the insidious disease that took their mother's life.
The specific gene is called the “breast cancer gene” because statistics show women who have it are at higher risk of developing both breast and ovarian cancers.
That's why both sisters decided to have their ovaries and breasts removed.
It's not an uncommon decision among women who are positive for the BRCA 1 or BRCA 2 gene mutations, said Dr. David Burger, a board-certified radiologist at Integris Comprehensive Breast Center of Oklahoma.
“It's an individual decision. They have a 60 percent lifetime risk of developing breast cancer. For the general population, it's about 12.5 percent or one in eight,” Burger said.
For Shepherd and Holden, the risk of developing breast cancer is as high as 87 percent, said their gynecological oncologist, Dr. Joan Walker . This is due to the sisters' specific mutation of the BRCA 1 gene, along with the fact that the sisters' maternal grandmother died at the age of 38 from breast cancer.
Everyone has BRCA genes. They are tumor suppressors when functioning properly; mutation of these genes is linked to hereditary breast and ovarian cancer.
“I've also had several patients that know they have the mutation, know they're likely to develop breast cancer, but they don't want to remove their breasts. So it's just a very personal decision,” Burger said. In these cases, doctors recommend heavy surveillance by way of frequent mammograms, MRIs and ultrasounds.
Recently, celebrity Sharon Osbourne revealed that she'd undergone a prophylactic mastectomy after learning she was positive for the gene mutation.
“As soon as I found out I had the breast cancer gene, I thought, ‘The odds are not in my favor',” she told Hello! magazine. “I've had cancer before and I didn't want to live under that cloud. I decided to just take everything off, and had a double mastectomy.”
Other celebrities have opted for double mastectomies in the past, including Christina Applegate and Kathy Bates.
Not as well publicized is the fact that women who carry the BRCA 1 or 2 mutations face up to a 40 percent likelihood they'll develop ovarian cancer during their lives, compared to only 1.4 percent of the general population, according to cancer.gov.
“My husband said once, ‘Would you get on an airplane if you knew there was a 50-50 chance it would crash?'” Holden said.
Shepherd and Holden were not willing to take those kinds of chances with their lives. More than anything, they said they don't want to leave their children motherless or for them to experience the excruciating pain that comes with losing a parent too young.
Within a few months of each other in 2011, both women went under the knife to have their ovaries and fallopian tubes removed. Holden went one step further, opting also to have her uterus removed. New research suggests that some ovarian cancers originate in the fallopian tubes, so removing them adds an additional layer of protection against cancer.
A little more than two weeks ago, Shepherd underwent a double mastectomy and reconstructive surgery all at once. Holden plans to have the same surgery in a few months. She would likely have had the procedure sooner, but said she was scared. She didn't know who would take care of her three kids during her recovery. She worried she'd look cut up and have ugly scars as reminders.
“I was scared that my husband wouldn't be attracted to me anymore. I was scared of a lot of things,” she said. But when her mother-in-law unexpectedly retired five years early, she knew it was a sign that it was time for her to have her mastectomy, since her mother-in-law would be able to help care for her kids.
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.