Theirs was a familiar dynamic in human relationships. Mother and daughter both passionate. Both stubborn. Both strong defenders of what they believed in.
So different. So alike.
Caroline remembers arguing once with her mother, Belinda Sue “Bindy” Nantais, as she lay in a hospital bed in the summer of 2011. She can’t remember what it was about, but she knows it wasn’t important. When Caroline walked out of the room, her father took her aside.
“You know this is going to kill her,” he told her.
“It took him saying that to finally wake me up,” Caroline says. “It terrified me.”
Bindy died a few weeks later from ovarian cancer. Caroline recalls her mother looking beautiful — as if she weren’t even ill.
“I just didn’t think it would ever take her,” Caroline says. “She was too strong-willed.”
Ovarian cancer is rare, but when it comes alive in a woman’s body, it’s the master manipulator. It’s quiet and mercurial. And it knows how to hide until, in most cases, it’s too late. That’s why, of the approximately 22,000 women who will get ovarian cancer in 2012, most won’t find out until the disease has reached “stage three,” or advanced status. Eighty percent will not live past the five-year mark.
That extremely high mortality rate makes ovarian cancer one of the deadliest of all cancers. Yet it remains a bit player on the cancer stage of public awareness. Tom Nantais was Bindy’s husband and the father of Caroline. He’s also the chief operating officer of the Henry Ford Medical Group, overseeing the administrative management of 1,100 staff physicians. Surrounded by top medical experts, Nantais admits even he didn’t really know anything about the No. 1 killer among gynecologic cancers. Many of the 680 people who attended Bindy’s funeral were equally stumped. “The reactions were pretty profound,” Nantais says. “It’s remarkable to be taken by a disease that’s so subtle. They simply had no idea about ovarian cancer.”
Caroline describes her mother as “wild at heart,” the “somewhat hippie” counterpart to her devoutly Catholic father. “She freed his spirit,” Caroline says of her parents’ relationship. “She always said, ‘All you need to know is that God is love. Don’t make it complicated.’” After 17 years of marriage and two children, however, the couple divorced. They had met and married at such a young age that Caroline thinks her mother, who had a degree in elementary education and was co-owner of Nature Kids Preschool in Lake Orion, just needed to feel free. The couple lived apart for nine years, but remained close. Then, in 2006, Nantais helped his ex-wife through a particularly emotional time. They remarried in a small ceremony with Bindy later telling her daughter how unfortunate her decision to divorce had been. “They never stopped loving each other,” Caroline says. “It’s such a cliché, but it’s true.”
Their reunion would be short-lived, however. In March 2007, Nantais says Bindy started complaining of tighter-fitting clothes. She felt bloated for longer stretches. Annoying, but not a sign of anything seriously wrong, they thought. Their son was getting married that June, so Bindy decided a visit to the doctor could wait until after the wedding. In July, they got the news: Bindy had advanced ovarian cancer. The night before her doctor’s appointment, Nantais had searched his wife’s symptoms online. Ovarian cancer came up as a possibility, but surely this wasn’t the case for Bindy. “We were shocked,” Nantais says. She died four years later, like so many others who are diagnosed only after the ovarian cancer has reached stage three and migrated to other vital organs.
Nantais established the Belinda Sue Fund for Ovarian Cancer Awareness and Research in November 2011 to ensure his wife’s death would not be in vain. The fund has raised $85,000 so far. As one drives westbound on I-94 toward the airport, a billboard shows a large photo of Bindy. “Know the Symptoms” of ovarian cancer, it states. The disease has long been dubbed “the silent killer,” but experts now generally agree this is a myth. Studies have shown that 90 percent who are diagnosed show a distinct pattern of symptoms. But because the symptoms are so generalized and vague — bloating, pelvic discomfort, indigestion, gas, changes in bowel or bladder habits — even primary-care physicians tend to suspect far more common ailments. Women either tend to have no idea that anything is wrong — as was the case for Bindy — or, if they do, can sometimes get caught in a cycle of fruitless medical testing.
It took two years for Gail Purtan, wife of former WOMC-FM personality Dick Purtan, to figure it out. Every doctor she visited told her she was a “healthy woman,” recalls Purtan, now a 15-year ovarian cancer survivor. “It was as if I was crazy!” A colonoscopy — one of the last tests Purtan underwent — finally led to a CAT scan that revealed suspicious “fat” in her abdomen. It turned out to be ovarian cancer, which had spread to other organs. That was in 1997, and Purtan still marvels at the experience. “No doctor thought it could be ovarian cancer,” she says. “It wasn’t even mentioned.” Purtan received treatment at the Karmanos Cancer Institute and has since become an advocate for ovarian cancer awareness. A fund established in her name in 1998 at Karmanos has so far raised more than $1 million for ovarian cancer research.
Another metro Detroit ovarian-cancer survivor, Zina Kramer, complained of a “heaviness” in her pelvic area, which doctors diagnosed as a “dropped” bladder and the prolapse of her uterus. It’s a common condition in older women who have given birth, and surgery to correct it is routine. It wasn’t until doctors cut her open that they realized ovarian cancer was the real culprit. Diagnosed on the operating table, Kramer also has beaten the odds seven years out from her diagnosis despite a recurrence. But she knows how small the survivor community is — the last of four women Kramer supported as they dealt with their own struggles died a few months ago. Ovarian cancer, as Kramer puts it, is still “the stepchild that no one talks about.”
Such tales are common, says Sarah DeFeo, director of scientific affairs for the Ovarian Cancer Research Fund. “We hear these awful stories time and time again, of women shuffling between doctors and specialists for months before someone finally starts to hone in,” DeFeo says. “Many doctors have never even seen a case of ovarian cancer.”
Compounding the issue is that an effective screening tool doesn’t exist. Consider basic anatomy: Ovaries lie deep within the abdominal region, surrounded by soft tissues that are designed to be malleable. How else could a woman carry a growing fetus? As it turns out, it’s also the perfect environment for tumors to multiply in secret. And there’s just no easy access. In fact, currently the only way to definitively diagnose ovarian cancer is to perform invasive surgery in order to get a tissue sample that can specifically be tested for cancerous cells.
For now, there’s the CA-125 blood test, something that “just doesn’t work well enough,” admits Dr. Kevin Reynolds, a specialist in gynecologic malignancies at the University of Michigan Health System. The test measures a certain cancer antigen in the blood. Ovarian cancer masses can cause higher levels of the antigen, but so can a host of other conditions, including pregnancy, endometriosis, and fibroids. So while the test has proved helpful in monitoring recurrences of ovarian cancer in women who are in remission, experts do not recommend it for healthy women with no family history. A large, ongoing study sponsored by the National Cancer Institute to determine if certain tests can reduce the number of deaths from cancer tells us why: Results published in the summer of 2011 showed that the CA-125 blood test, coupled with a trans-vaginal ultrasound, was not an effective method for early detection and did not reduce the mortality rate. Perhaps more alarmingly, this detection method led to false positives in more than 1,000 cases, which resulted in unnecessary surgery.
While these results may have been disheartening to medical professionals (this is the same study that made headlines for exposing the limitations of prostate-cancer screening), Dr. Adnan Munkarah of Henry Ford Hospital says it’s simply confirmation of what gynecologic oncologists have known for some time.“We need a smarter approach to this disease,” Munkarah says.
Chair of the department of women’s health at Henry Ford and a specialist in ovarian cancer, Munkarah says finding an accurate screening tool, such as a genetic marker specific to ovarian cancer, will drive future research. Cure rates have improved significantly in breast cancer over the years because of relatively accurate screening tests, including mammograms. Ovarian cancer is no more virulent than other common forms of cancer, and with a similar gold standard in testing that could catch it in earlier stages, fewer women would die. Finding a better way to interpret CA-125 levels may be just as important, Munkarah says. By recognizing a pattern in the rise and fall of this cancer antigen in patients over time, doctors may be better equipped to accurately predict who will get the disease and who should be monitored more regularly.
But how do doctors assess ovarian cancer risk now? It’s a challenge, particularly because the cause is unknown. A theory that has gained traction over the last decade suggests that ovarian cancer might actually start at the tip of the fallopian tubes, although the research has yet to go beyond circumstantial evidence. More accepted is the evidence that repeated ovulation can cause cell mutations on the surface of the ovary, leading those cells to become cancerous. For this reason, taking birth-control pills for at least five years and being pregnant — both scenarios halt ovulation — might reduce risk greatly. Women who are carriers of the BRCA1 and BRCA2 gene mutation, thought by researchers to increase a woman’s chances of developing breast and ovarian cancer, are also at greater risk. But again, the elusive nature of the disease prevails. Less than 10 percent of women who develop ovarian cancer have genetic risk factors.
As researchers continue to deal with the science, experts stress that women must take responsibility for their own health, particularly when it comes to any serious disease, such as ovarian cancer, where, although the risk is low, missing the warning signs can have severe consequences. That might be why the tagline on the Belinda Sue Fund billboard, “Know the Symptoms,” is so powerful. Experts agree this is truly the best line of defense for healthy women. These vague symptoms, such as bloating, have no pattern in the general, healthy population. But women who might be suffering from ovarian cancer will experience them for more than two weeks. That is never normal, and women should be proactive in talking to their doctors about it.
If Purtan’s ordeal taught her anything, it’s that women need to place more faith in the knowledge of their own bodies — their own gut feelings — when they think something’s wrong. “Be persistent,” she says. “Push. Be your own advocate.”