Like many women, Roni Lemos was not the type to complain. So when she repeatedly was reassured that her persistent bloating and discomfort were nothing serious, her husband, Wayne, said, she accepted it.
"I think people hear what they hope to hear," he said.
Today, four years after his wife's death from ovarian cancer, which came two days after her 44th birthday and 18 months after she was diagnosed with an advanced stage of the disease, Wayne Lemos does not blame doctors so much as an illness whose mortality rates -- unlike other cancers -- have barely declined since President Richard Nixon initiated the "War on Cancer" in 1971.
"It's a very sad, sad cancer," said Susan Gary, the Dallas-Fort Worth chapter manager of the National Ovarian Cancer Coalition (NOCC).
It is also an unpopular disease as far as funding goes, with National Institutes of Health statistics showing that ovarian cancer received $138 million in research funding in 2011, compared with $1.236 billion for heart disease, $1.076 billion for diabetes and $715 million for breast cancer.
An NIH spokesperson points out, however, that it is useful to note that money given to breast cancer, for example, can translate to research that will help the fight against other cancers.
While ovarian cancer is the ninth-most-common cancer among women, it is the fifth-leading cause of cancer-related death and is the deadliest of gynecologic cancers.
Perhaps most chilling of all is that unlike a mammogram for breast cancer or a pap smear for cervical cancer, there is no single definitive test that detects ovarian cancer. And the symptoms, which include bloating, pelvic pain, feeling full quickly and frequent urination, are often so subtle that they alarm neither a patient nor her doctor.
"To me, there are no minor symptoms," said Dr. Debra Richardson, an OB/GYN in the division of gynecologic oncology at the University of Texas Southwestern Medical Center in Dallas. "If a woman experiences a change in her baseline and the symptoms occur most days of the month, even 15 days of the month, it is very concerning."
"On top of that," added Dr. Angela Gardner, a surgeon at Texas Southwestern who has a family history of ovarian cancer, "there is sort of a tradition that will hopefully change, where women stop getting annual pelvic exams when they stop having children. But unfortunately, the late 30s, early 40s are prime ages for ovarian cancer."
There is still a lot of work for us to do to get more people to understand what ovarian cancer is and how deadly it can be.” -- NOCC development and events manager Liliana Rogers
Roni Lemos, who at the time of her death had a 16-year-old daughter and a 12-year-old son, went in for gallbladder surgery in November 2006, at which time doctors found that she had Stage III ovarian cancer. A year later, doctors told the family she could survive as many as five more years, but on Super Bowl Sunday of 2008, Roni experienced severe pain and was told the cancer had returned. She battled for seven more months before her death in September.
The American Cancer Society estimates that by the end of 2012, more than 22,000 new cases of ovarian cancer will have been diagnosed in the U.S. this year and that approximately 15,500 women will have died of the disease. For those diagnosed in Stage III or IV, the survival rate for five years is 30 percent or lower. If the cancer is caught in Stage I or II, however, patients can expect a five-year survival rate of 90 percent. Unfortunately, only 19 percent of all cases are caught in the early stages.
"We hear a lot of stories of women who are diagnosed who really weren't persistent enough, who were referred to too many doctors and didn't know their genetic history," said Liliana Rogers, development and events manager for the NOCC.
"Women tend to put ourselves last, whether it's getting enough sleep or getting a checkup. If we can just educate more women to be in tune with their bodies, the numbers will change. But there is still a lot of work for us to do to get more people to understand what ovarian cancer is and how deadly it can be."