Ovarian Cancer ranks fifth in cancer deaths among women, and the American Cancer Society estimates this year, about 21,410 women will receive an ovarian cancer diagnosis and about 13,770 women will die from the disease.
Part of the reason ovarian cancer is so deadly is there are no clearly defined symptoms to watch out for and no screening tests available, which means it's difficult to detect in the early stages. In fact, only 20 percent of ovarian cancer cases are diagnosed in stage I or II.
The good news is, new scientific breakthroughs and cutting-edge technology mean advancements in diagnosis, treatment and prevention are happening every day. Much of this research is funded by Ovarian Cancer Research Alliance (OCRA).
September is Ovarian Cancer Awareness Month, and in this exclusive Q&A with Giddy, representatives from OCRA discuss the latest research and resources available for ovarian cancer patients and survivors, and why there is reason to hope.
Tell us a bit about Ovarian Cancer Research Alliance.
Ovarian Cancer Research Alliance (OCRA) is the leading organization in the world fighting ovarian cancer on all fronts, including in the lab and on Capitol Hill, and through innovative programs to support patients and their families. OCRA is the largest global, non-government funder of ovarian cancer research and has invested more than $110 million in research.
What are the ways OCRA advocates on behalf of ovarian cancer patients and survivors?
OCRA is an international organization with headquarters in New York City, and it is also the only nonprofit in Washington, D.C., advocating for the ovarian cancer community. We work with legislators to ensure federal ovarian cancer research and education, patient safety, and access to high-quality care are protected on Capitol Hill.
In addition, we host the largest ovarian cancer support community, conference, and peer mentor program. And we lead the only survivor-led ovarian cancer medical education program: More than 900 volunteers speak each year to rising healthcare professionals about their experiences in order to enhance future healthcare providers' understanding of risk factors and symptoms, which can facilitate earlier diagnosis, and lead to better treatment and care. To date, we have spoken to more than 100,000 students. Finally, we provide a range of support services and resources for patients and their families.
What are some of the research initiatives OCRA is currently working on?
This year, we will award more than $6 million in grants to scientists at esteemed medical centers around the globe who are exploring questions across the ovarian cancer landscape. These grants enable the brightest minds in cancer research to tackle longstanding issues like ovarian cancer drug resistance, and to break new ground toward immunotherapy, precision medicine, combination treatments, genetic mutations and more. We are also partnering with another organization to fund a platform clinical trial to hasten drug development in an effort to help patients currently in treatment.
Scientists have recently discovered what they believe is the 'Achilles' heel' for ovarian cancer. Can you briefly describe this discovery? Why is it so promising?
An OCRA grantee, Dr. Sridevi Challa, was actually one of the scientists that made this discovery. NAD+ is a metabolite that supports cell growth and other metabolic pathways. In an ovarian cancer cell, this metabolite inhibits protein synthesis so that the protein levels don't get too high and form a toxic aggregate.
In other words, the NAD+ metabolite is working in the tumor cells to keep protein levels at an optimum in order to support tumor growth. This is what Dr. Challa and her team recently discovered—the connection between NAD+ and protein levels. So if they can manipulate the levels of the NAD+ metabolite, the cancer cell will die.
A recent study indicated that ovarian cancer screening doesn't save lives. What are the implications of this study and what does it mean for the future of ovarian cancer screening? Should women stop getting screened?
It is important to make clear that there is no early detection or screening test for ovarian cancer. (Pap smears screen for cervical cancer, not ovarian.) Results from a large U.K. clinical trial, which involved more than 200,000 postmenopausal women who were followed for more than 15 years, showed that screening average-risk, asymptomatic women for ovarian cancer does not reduce deaths from the disease.
The trial, called the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS), is the largest trial of its kind in the world. Patients in the trial were randomized into three groups: 1) no screening, 2) annual screening with ultrasound, and 3) annual screening with ultrasound and CA-125 blood test (multi-modal screening).
The results revealed that none of these approaches stopped women from dying from ovarian cancer. Furthermore, while in some cases the screening did help catch ovarian cancer earlier, it still didn't lead to fewer deaths. This was a devastating and surprising outcome—that earlier detection of the disease does not necessarily save lives.
This study, disappointing as it is, was crucial because now we know that currently, available technology isn't good enough. If we want to detect ovarian cancer early enough to save lives, we need new technologies and new approaches. The best investment we can make is in better understanding the origins and microbiology of the disease so that we can continue to make strides in precision medicine and other treatment options.
It's long been established that using oral contraceptives is linked with a lower risk of ovarian cancer, but scientists weren't sure if this held true for women with the BRCA gene mutation as well. New research suggests there is a link for women with the BRCA1 mutation. What are the implications of this research?
The new research is good news for people with BRCA1 mutations, because it concludes that oral contraceptive use is associated with a lower risk of developing ovarian cancer, and that this protection lasts quite a while.
For women who have inherited this mutation, which significantly increases risk of ovarian and breast cancer, it's clear that taking oral contraceptives is a positive, proactive step they can take to reduce their risk of cancer. This may be especially appealing for younger people who are not yet ready to have their ovaries removed, but who are concerned about their risk.
Research indicates ovarian cancer patients are 3 times more likely to be diagnosed with mental health disorders after diagnosis. Why is this? What resources are available to patients as they navigate their illness?
Many ovarian cancer patients, and gynecologic cancer patients in general, deal with unique psychological stressors, in addition to the physical toll of the disease. These stressors are connected to an awareness of statistically poor outcomes in ovarian cancer, as well as the strong connection between the parts of the body that are affected and fertility, sexuality and feminine identity. Furthermore, gynecologic cancers are much less talked about in public discourse than other cancers, which can lead to feelings of isolation.
OCRA provides support in a number of ways: An oncology social worker is available Monday to Friday at 212-268-1002, and if not available, will call back within 24 hours. OCRA also offers a peer-to-peer support program that pairs gynecologic cancer patients with a trained mentor survivor; an online support community, Inspire; and Staying Connected, an online support group series. Visit ocrahope.org for a wide range of resources and information.
What advice would you give to someone who has just been diagnosed with ovarian cancer? What is the most important thing she can do right now?
One of the very first things we encourage patients to do is consult with a gynecologic oncologist. Many studies conducted over the past decade have shown that an ovarian cancer patient's chance of survival is significantly improved when a gynecologic oncologist performs the surgery. Some studies showed survival rates as much as 50 percent greater, compared to those whose surgeries were done by surgeons less experienced in the techniques used to treat ovarian cancer.
The second thing we suggest is to talk to your doctor about clinical trials. Clinical trials are a great way to access cutting-edge therapy, as they may allow patients to get access to new interventions sooner than the rest of the population, and can have a positive effect on one's outcome. Those involved with clinical trials have more doctors' visits and are closely monitored. Furthermore, the therapy or drug being tested may be better than the current standard of care regimen. And contrary to what many believe, all participants in clinical trials receive treatment, either with the standard of care or with the carefully vetted new treatments.
Do you have any final thoughts you'd like to share with our readers?
Ovarian cancer is a terrible disease, but we need to talk about it. People need to know their family medical history (and get genetic testing if warranted); people need to be able to have honest conversations with their doctors; and patients dealing with a diagnosis and treatment need greater societal awareness so they don't feel so alone. And if we can't reduce the stigma around women's healthcare—specifically gynecologic health—we won't achieve parity with other diseases when it comes to federal funding.
Visit ocrahope.org to learn more about the disease, hear stories from survivors, discover ways to get involved and make your voice heard for the ovarian cancer community, and, of course, help fund lifesaving research.