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A new study on women with ovarian cancer shows that ignorance about this condition is common among patients in the 44 countries studied. And this ignorance has a cost. The disease is more easily treatable, even potentially curable, in its infancy.
Women's responses also suggested that their doctors were ignorant. Many of them said that the diagnosis took a long time and that they were not referred to competent specialists.
The study was based on an online survey of 1,531 women diagnosed with cancer. It was conducted by the World Ovarian Cancer Coalition, a non-profit support group, between March and May of this year.
Ovarian cancer is the eighth leading cause of cancer in women, according to the World Health Organization. Nearly 300,000 women will develop it this year. According to the World Ovarian Cancer Coalition, one in six will die within three months of diagnosis and less than half will be alive in five years.
Before the diagnosis, two-thirds of the women interviewed had never heard of ovarian cancer or knew the name, but knew nothing about the disease.
Amanda Tabral Vieira Benites, who now lives in São Paulo, is one of them. Six years ago, at age 21, she had no symptoms when she went to a routine medical program in the small town where she lived. His doctor regularly performed pelvic ultrasounds, which was not a common practice in the United States. He found something.
Eighty-six percent of Brazilian women interviewed knew very little about ovarian cancer. Even with Benites. "At the time, I knew absolutely nothing about my cancer, nothing," she says, despite her university studies. She moved to São Paolo for access to better care. She has health insurance, and for her at least, "things went super fast." She underwent four surgeries and six months of chemotherapy. She remains cautiously optimistic: cancer has been gone for almost five years.
The lack of visible symptoms of Benites was not unusual. When there are symptoms, they usually appear long after the cancer has started to develop and they are nebulous – problems such as abdominal bloating, indigestion, nausea, diffuse pain and lack of energy. In the survey, less than half of women with ovarian cancer sought care in the month following the onset of the first symptoms. One in ten waited six months. Family history is a risk factor, but only one in five women with a strong family history had undergone a genetic test.
In the course of the survey, patient support organizations, their physicians or social media asked women in high, middle and low income countries diagnosed with cancer to have cancer. ovary to take an hour to complete an online questionnaire about their experiences. Fifty-seven percent were at stage 3 or 4 at the time of diagnosis. Frances Reid, a study designer for the World Ovarian Cancer Coalition, said the women surveyed were younger and likely to be more educated than the average woman with ovarian cancer, which would make the results likely.
The survey also revealed that only about a third of respondents had discussed clinical trials with their doctor.
The average delay between the first symptom and the diagnosis was 31 weeks, two weeks less for the richest countries and a little longer for the poorest countries. But Hungary has done better than the US – 25 weeks versus 36 weeks. Among high- and middle-income countries with enough data to be statistically significant, Italy was the best, with 62% of women being diagnosed less than a month after their first visit. The average was 43%. The United Kingdom was far behind with 30%. Germany has been quick to make a diagnosis, but has little access to specialists; the UK was the opposite.
"No country is doing it well," Reid said. "Different countries do different things, but they do not do other things as well."
"What they report is consistent with what we know about ovarian cancer," said Lindsey Torre, an epidemiologist with the American Cancer Society, who recently wrote a cancer overview of Ovarian in the United States. "There is not enough information out there."
Some of the patients of Manas Chakrabarti, an Indian gynecological oncologist from Kolkata, participated in the investigation. Chakrabarti says that when he went to medical school many years ago, he was taught that ovarian cancer did not present any symptoms. Now he knows that is the case, but many doctors around the world do not know it. "His symptoms are so subtle that unless your mind is open, your eyes do not see," he says.
Respondents eventually came for treatment, while in many parts of the world, people with cancer had nowhere to go. "If we can actually get data from people who have not been treated or can not use a computer, the results will be absolutely devastating, I can assure you," he says. "It's way worse than it looks."
"We need a lot of additional studies, on larger platforms," said Chakrabarti. "We have a long way to go."
Joanne Silberner, former NPR correspondent for health policy, is a freelance journalist based in London. [Copyright 2018 NPR]
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