Couple leads crusade for ovarian cancer awareness
September 18, 2016
PUEBLO, Colo. — Delene "Dee" Hall knew something was wrong. She had lower back pain and bladder problems, and menstruation was excruciating.
For years, decades even, she raised the issues with her doctors. They would diagnose her problem, possibly send her home with a prescription and tell her it was nothing serious, to essentially "walk it off."
Then in 2008, at 46 years old, Dee Hall noticed a lump on the side of her neck. She told her physician, who referred her to an ear, nose and throat specialist, who took a biopsy of the lump. On Dec. 1 of that year, she got her official diagnosis — stage IV ovarian cancer — and prognosis — terminal within six months. The illness had metastasized, and an oncologist gave Dee a 10 percent chance of survival, her husband, Charlie Hall, said.
Seven years and nine months later, the Halls have a mission: to inform as many people as they can about the little-known killer of the cancer world. September is National Ovarian Cancer Awareness Month, and the Halls, small-business owners from Pueblo West, are literally taking their message to the streets, reported The Pueblo Chieftain. Active members of the Colorado Springs-based Sue DiNapoli Ovarian Cancer Society, the couple will pound the pavement Sept. 18 with the eighth annual Be Ovary Aware 5K run and 3K walk at America the Beautiful Park.
They don't harbor any anger toward the doctors who misdiagnosed Dee's condition. After all, the signs — bloating; pelvic or abdominal pain; trouble eating or feeling full quickly; and urinary symptoms such as urgency and frequency — are often associated with benign conditions or cancers of other origins, according to the American Cancer Society.
"That's the thing about ovarian cancer, it is detected at such a late stage," Dee Hall said.
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"Women don't know the symptoms."
Dr. Dirk Pikaart, southern Colorado's sole gynecological oncologist and the physician at Springs-based Southern Colorado Gynecologic Oncology, said the lack of recognition is complicated by the fact there is no foolproof diagnostic screening for the cancer.
And it doesn't help that ovarian cancer has a low rate of incidence, compared to other diseases.
"For women in the U.S., there's a lifetime risk of about 1.5 to 2 percent of developing ovarian cancer," Pikaart said.
That translates to an incidence of about 12.7 cases per 100,000 women or around 22,000 new diagnoses each year.
"It's low enough to where finding a good screening test is very, very difficult," he said. "You need a test that is super sensitive to catch those few (cases), but you don't want a whole bunch of false positives."
Nonetheless, ovarian cancer accounts for about 14,000 deaths in the U.S. annually, making it the fifth-highest cancer-related killer of American women, Pikaart said.
In Dee's case, biology also played a role. She has a mutation on her BRCA2 gene, one of two genetic tumor suppressors. Variations of either the BRCA1 or BRCA2 increase the lifetime risk of ovarian and breast cancer tenfold, according to the cancer society.
Actress and producer Angelina Jolie Pitt made headlines in 2013 when she announced that, due to a mutated BRCA1 gene, she had undergone a preventative bilateral mastectomy. Then, in 2015, she once again stepped forward with the announcement that she had voluntarily given up her ovaries and fallopian tubes.
She wrote in a March 24, 2015, New York Times op-ed that the BRCA1 mutation "gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer."
"If somebody has a family history of multiple … generations with breast and/or ovarian cancer, especially if they show up at the younger ages, we recommend they be tested for these mutations," Pikaart said. "We test all of our ovarian cancer patients for this mutation, then we test all of their family members. It can be lifesaving."
Beating the odds
By the time Dee Hall's illness was identified, her CA 125 numbers, a blood test that can be used to look for early signs of ovarian cancer in high-risk women, were in the thousands. (The normal range in healthy women is 0-35 units per milliliter of blood, according to the health website Medscape. com).
The American Cancer Society estimates that only 17 percent of women diagnosed with stage IV ovarian cancer will survive for five years.
Nonetheless, the upbeat Halls took the attitude that they not only could beat the odds, they would. They went on a raw diet, bumping up the fruits and vegetables and cutting out unnecessary fats and proteins. They juiced. And they started an aggressive chemotherapy program that had Dee undergoing 13 months of treatment.
"It is a journey," Charlie Hall said. "The truth of the matter is you have to have shoulders the size of an aircraft carrier."
When Dee would express fear or insecurity, Charlie Hall would — he admits — suppress his own worries for her sake. And if friends inquired into her health, he would downplay the illness.
"Inside I was like, 'I am scared to death,'" he said, briefly choking up.
Dee Hall was 48 when she had a hysterectomy. By that point, although surgeons removed the entirety of her reproductive system, they found no additional tumors.
In addition, her CA 125 numbers were on the decline. Today, they are in that targeted 0-30 range.
Positively in remission
Dee Hall has her blood drawn annually to ensure that they're staying there. So far, so good.
"It was a goal to get to two years," she said.
But now, she is so confident in her longevity that she recently started a support group for all survivors of gynecological cancer. The group meets at 6 p.m. the fourth Wednesday of the month at St. Mary-Corwin Medical Center, Dee Hall said.
She daily bedecks herself in teal — the color of ovarian cancer awareness — and is always willing to lend a helping hand to other patients.
"Even though I'm not recently diagnosed, it's nice to be able to talk or be a mentor for someone," she said.
"What she's done for other survivors has been phenomenal," Charlie Hall said. "If we can save one person's life or ease one sleepless night … "
He paused. For all their positivity, hanging over the conversation was the simple fact that ovarian cancer does come back.
"That's the nature of the beast," Dee Hall said.
"Our philosophy is it's going to come back, yes, but we're just going to stay in the game long enough" to find a cure, Charlie Hall said. "I like our chances. I would bet on anything."