As ubiquitous as cancer is, there are alarming gaps when it comes to both knowledge and understanding of the disease. This is especially true of less frequent varieties, such as ovarian cancer, which the Centers for Disease Control and Prevention (CDC) ranks the eighth most common cancer in the United States. Yet it has a death to incidence ratio that’s stunning, Dr. Jerome F. Strauss III told Medical Daily: More than half of women diagnosed will die from it.

“If you look at the 21,000 women who will receive a diagnosis this year, 14,000 are going to die,” said Strauss, the executive vice president for medical affairs and dean of Virginia Commonwealth University School of Medicine in Richmond, Va . “It’s almost an orphan disease, but it’s lethal. Most [cases] are high-grade. And they’re insidious because they start in a small number of cells.”

That’s just one of the eye openers contained in a nearly 400-page report Strauss and a committee of members put together after the CDC tasked them to assess the current state of ovarian cancer research. It covers everything from basic biology to palliative, end-of-life care. It doesn’t define the standard of care for ovarian cancers, rather it identifies the gaps and unique research opportunities — what needs to be done to achieve better screening and treatment.

We need to identify different subtypes

Though deadly, ovarian cancer can be effectively treated when doctors catch it early enough. The committee found that “roughly two-thirds of women with ovarian cancer are diagnosed in an advanced stage, which is associated with less than 30 percent overall five-year survival rate.” While the vast majority of women with ovarian cancer respond well to treatment, it generally recurs and becomes more resistant to chemotherapy.

One of the more notable gaps the report found had to do with ovarian cancer subtypes. For the most part, the general public and health care providers wrongly believe ovarian cancer is a single disease. In fact, there are different kinds. And not all ovarian cancers originate in the ovaries either; some, Strauss found, can arise in the fallopian tube and other parts of the reproductive tract before they metastasize to the ovary. Knowing there are different subtypes inspires a “framework that provides advancing research in screening detection,” Strauss said, “a major contributor to survival rate.”

That said, high-grade serous carcinoma, a type of ovarian cancer that starts in the surface layer of the ovary, makes up 70 percent of all cancer cases — it’s the most common and the most lethal form, Strauss said. There are other important subtypes, such as endometrioid cancer and clear cell cancers, but they don’t occur as frequently.

Developing a deeper understanding of the many different origins of ovarian cancers will help inform the approach pathologists and clinicians take when treating their patients. Right now, experts lack a common language or framework to identify and characterize these diseases. This in turn makes it “very difficult to identify with precision the risk factors associated with different subtypes and also potential, effective treatments,” Strauss said.

That’s not to say people aren’t currently working toward bridging these gaps. Perhaps one of the largest efforts was a study just published in The Lancet where researchers aimed to establish the effect of early detection screening methods. The results showed women who received an annual screening, either a multimodal test for levels of the protein CA-125 or a transvaginal ultrasound, were less likely to die from ovarian cancer. Memorial Sloan Kettering reports that more than 90 percent of advanced ovarian cancer cases produce CA-125, while a transvaginal ultrasound seems to be a consistent and promising screening method.

Conversely, the CDC report found that uptake of genetic screening remains alarmingly rare in spite of new knowledge that women with the gene mutations most often associated with breast cancer, BRCA1 and BRCA2, have a 39 percent increased risk of developing ovarian cancer by the age of 70, Strauss said; the gene can be passed on by either parent.

Race and money matter

The advancements in ovarian cancer care have benefited some women, but not all. Overall, the five-year relative survival for all types of ovarian cancer is 45 percent, a rate that has declined among African-American women, Strauss said. A 2012 study from the University of California, Irvine, found that African Americans and poor women were less likely to receive the highest standards of care, which leads to worse outcomes compared to those of white and affluent patients. Women on Medicaid and those with no insurance have a 30 percent increased risk of cancer death; poor women experience worse outcomes regardless of race, according to the research.

A separate study conducted at the University of Texas M. D. Anderson Cancer Center in Houston found that, despite its decade-long availability, a majority of women with ovarian cancer were unaware of genetic testing for BRCA1 and BRCA2 mutations. And this awareness was more profound among minority women — 69 percent of Hispanic and 88 percent of African American respondents hadn’t heard of it compared to 52 percent of white women.

Women treated by a gynecological oncologist definitely gain an advantage in survival, as do women who undergo intraperitoneal chemotherapy, Strauss said. The latter treatment is a type of chemo, sometimes called a belly bath, that has proven more effective than a standard intravenous drip of therapy. A 2007 study found that women treated by non-gynecological oncologists or surgeons who perform fewer ovarian cancer surgeries were less likely to receive recommended surgical care. The report concludes that we need more research to better understand the racial disparity in treatment.

Where women can look for help

Women should take heart that there are targeted therapies on the horizon — precision medicine and immunotherapy treatment approaches, as well as new clinical trial designs to study the efficacy of existing therapies are currently underway. More importantly, the report notes how others might support women who have been diagnosed. Nutrition, exercise, and discussion surrounding palliative care can benefit and improve quality of life.

The American Cancer Society reports that palliative care helps relieve symptoms, but it doesn’t work to cure cancer. It’s more to help the patient feel as good as they can for as long as possible once their treatment options have run out. “Your hope for a cure may not be as bright, but there is still hope for good times with family and friends — times that are filled with happiness and meaning. Pausing at this time in your cancer treatment gives you a chance to refocus on the most important things in your life,” the Society writes.

Women, their families, and all those invested in advancing ovarian cancer care — from funders of research to advocacy groups — can read the findings of the CDC’s ovarian cancer report at the Inside Knowledge campaign, a site for the latest research, risk factor calculator tools, and survivor stories.

The blanket recommendation for now is to see a doctor if you experience symptoms such as pelvic and abdominal pain, back pain, chronic tiredness, and bloating. The CDC reports that women should also see their doctor if they have abnormal bleeding from the vagina. Ovarian cancer can be a deadly disease, but not if it’s caught in time.

Source: National Academies of Sciences, Engineering, and Medicine. Ovarian cancers: Evolving paradigms in research and care. The National Academies Press. 2016.