The bipartisan Congressional Ovarian Cancer Caucus was launched Tuesday in Washington to bring more awareness of and research into a disease that kills more than 14,000 women each year.
Representatives Sean Duffy of Wisconsin and Rosa DeLaura of Connecticut came together after both were personally touched by ovarian cancer. DeLaura and Duffy’s sister are survivors of the disease, and Duffy lost a very good friend to the cancer.
Calaneet Balas, Ovarian Cancer National Alliance chief executive, said the caucus would will remind Congress of the need for funding.
“The alliance has been working for nearly 18 years now, and with a lot of champions on [Capitol Hill],” Balas said. “We’ve been able to raise about $2.2 billion for research and awareness, but this caucus is going to be really focused on continuing that awareness all year round on the Hill through members, as well as focusing on increasing some of those appropriations for research and education.”
The alliance says that the survival rate for ovarian cancer has improved, but that there is no test for early detection; symptoms are often confused with those of other diseases, leaving 85 percent of women diagnosed when the disease is in its later stages. More than 50 percent of these women will not live more than five years after being diagnosed.
Balas said researchers are making progress in understanding how gene mutation might put a woman at an elevated risk for ovarian cancer. She pointed to the case of actor Angelina Jolie, whose mother died of the disease. Jolie "had that BRCA gene and had a prophylactic double mastectomy and ovariectomy" as a preventive measure.
Balas added that scientists are starting to understand the genetics of the tumors, which could lead to the development of more effective diagnoses.
Another big shift has been in treatment of ovarian cancer, such as intraperitoneal chemotherapy that is infused into the abdomen.
“That is a very new thing, really only in the last several years, and it is considered a very effective treatment ... for women who can tolerate it,” Balas said.
Cancer survivor Clara Frenk, a VOA TV producer, keeps a close eye on research and development. After numerous visits to various doctors for unexplained symptoms, she was eventually diagnosed with Stage 3 ovarian cancer.
Frenk offered the following advice: “Always be aware of what your body is telling you. Anything that is out of the ordinary needs to be checked by a doctor. In my case, my symptoms were so wide-ranging that you would have had to be a pretty clever doctor to connect the dots back to ovarian cancer.”
Frenk's symptoms included intense joint and gastrointestinal pain, acid reflux, shortness of breath and, most tellingly, an extended abdomen.
“I was gaining weight like crazy, but only around my midsection," she said. "If you look at pictures of me from that era, that period back in 2013, my face was very, very gaunt, but my abdomen was enormous. I looked like I was pregnant.”
One of the physicians she visited examined the skin over her abdomen and was able to make the connection that something was wrong.
“The bloating that one feels with ovarian cancer is not like the once-a-month bloating that women experience," Frenk said. "It is a very tight bloating that feels like pregnancy, and the skin is very tight. So by feeling my abdomen, [the doctor] knew that there was something wrong.”
After analyzing treatment options, Frenk chose one that best fit her busy lifestyle. Instead of getting aggressive chemotherapy every three weeks, which would leave her very weak and too tired to work, she chose to wear a patch that would administer the medication at a slower rate.
“I was still weak and tired, but I could function," she said. "I could come to work. I could walk. I could go shopping. That, for me, was very important, but that might be an option that might not be available for everyone."
Frenk shares information with others through her cancer diary blog under DCMedia Girl.
Early detection is key to surviving ovarian cancer, and as Frenk and other survivors advocate, if you detect something is wrong with your body, see a doctor and don’t give up until you get the answers you need.