Here, a gynecologic oncologist and researcher who specializes in low-grade serous ovarian cancer and a patient who’s been battling it for close to two years share what makes low-grade serous ovarian cancer different, and what you need to know about this disease. 1. Low-Grade Serous Ovarian Cancer Tends to Affect Women at a Younger Age The median age of diagnosis for ovarian cancer in general is 63. For low-grade serous carcinoma, however, the average age of diagnosis is about 45, according to David Gershenson, MD, a professor in the department of gynecologic oncology and reproductive medicine at The University of Texas MD Anderson Cancer Center. “So it definitely affects, on average, a younger population,” he says. Lexi Mestas, 29, knows this all too well. She was diagnosed with LGSOC at the beginning of 2021, when she was only 27 years old. “It poses a lot of challenging issues for young people who are [faced] with this extremely challenging cancer that uproots life plans, from career to family planning, all of it.” 2. Low-Grade Serous Ovarian Cancer Is Often More Chemo Resistant Low-grade serous ovarian cancer is slower growing than the more common high-grade type. At first glance, this might seem like a good thing, and like a faster-growing type might be more aggressive and harder to treat. However, there is a major downside to having a slower-growing cancer: Chemotherapy targets fast-growing cells, which means that chemo will likely not be as effective on a slower-growing form of cancer, like low-grade serous ovarian cancer. LGSOC is comparatively chemo resistant as opposed to high-grade serous carcinoma, Dr. Gershenson says, cautioning that this isn’t universally true. “I use the word ‘relatively’ because it doesn’t mean that low-grade serous carcinoma may not be sensitive to chemotherapy for some patients. That’s going to vary from one person to another,” he says. 3. It Tends to Recur Because ovarian cancer symptoms — such as bloating, abdominal pain, and fatigue — are vague and nonspecific, all forms of ovarian cancer, including LGSOC, tend to be diagnosed in the later stages, when the disease has already spread. “In women who are diagnosed with stage 2, 3, or 4, the relapse rate is historically in the 80 percent range,” Gershenson says. 4. Women — and Doctors — Need to be More Aware of the Symptoms There is not a lot of awareness about ovarian cancer in general and even less for LGSOC in particular. Mestas describes experiencing symptoms for a long time but struggling for years to get an accurate diagnosis. “I had symptoms like bloating; severe, daily indigestion; frequent urination; pain during intercourse; abdominal pain, and changes in bowel habits for so long and had been complaining about them for so long and seeing so many specialists who would brush it off and say, ‘Oh, just take some fiber,’ or ‘You just have irritable bowel syndrome,’” she recalls. Mestas was upset to learn that her experience wasn’t unique. “I was reading stories [from] Australia, New Zealand, and the U.K. of people who have very similar stories to me and felt like I needed to [say] something,” she says. She now uses social media, particularly her Instagram account @leximestas, to help advocate for and raise awareness about low-grade serous ovarian cancer. “If I were on Instagram and had been Googling or searching my symptoms [before being diagnosed], maybe someone like me would have popped up. I could have had an answer sooner or would have known more,” she says. 5. There Are Promising Advances in Treatment Gershenson is optimistic about recent progress in treatment for low-grade serous ovarian cancer. Among other advances, there are currently a number of completed or ongoing clinical trials of drugs for LGSOC that fall under the umbrella of targeted therapies, he says. Whereas chemotherapy works more broadly, killing all fast-growing cells whether or not they are cancerous, targeted therapy is more precise, specifically targeting certain genes and proteins that cancer cells need to grow and survive. Foremost among these drugs for low-grade serous ovarian cancer are those that fall into the categories of MEK inhibitors and CDK 4/6 inhibitors, says Gershenson. MEK inhibitors interfere with a specific cell-signaling pathway (the way that cells receive and respond to information) to inhibit cell growth and induce cell death in some tumors. CDK 4/6 inhibitors interrupt certain signals that stimulate the proliferation of cancer cells, hence slowing or even stopping their growth. When used in conjunction with hormone therapy, CDK 4/6 inhibitors have been shown to boost its efficacy. There are also a number of studies using low-grade serous carcinoma cell lines that have been developed in the laboratory to test new drugs, adds Gershenson. This is important because, he explains, “understanding more about the molecular biology of the disease will help us develop better treatments [and] is really a key.” As a result of advances, people are living longer: The average survival for low-grade serous ovarian cancer is now about 10 to 12 years, according to Gershenson. 6. The Disease Needs More Research — and Funding to Support It Research requires funding, and low-grade serous ovarian cancer needs more of both. LGSOC “does not receive the attention that other ovarian cancers receive,” Mestas says, adding that only 1 percent of all funding for ovarian cancer, based on the National Cancer Institute–funded research database, is accorded to LGSOC. Because of this, Mestas and others who have been diagnosed with low-grade serous ovarian cancer have taken it upon themselves to raise money for research — even in the midst of undergoing their own, often grueling, treatments. “We have to fight very hard as individuals while we’re also going through this physical struggle,” she says. “We are having to fundraise for our lives.” There are currently only two organizations worldwide dedicated to funding research for low-grade serous ovarian cancer: Cure Our Ovarian Cancer, based in New Zealand, and STARR Ovarian Cancer Foundation, which was created in 2020 in the United States. And because low-grade serous ovarian cancer receives so little funding, donors have an opportunity to make a huge impact with their contributions. “You have the chance to really be saving someone’s life or giving someone another Christmas or another day,” Mestas says. 7. There Is Hope Despite a lot of odds stacked against those with low-grade serous ovarian cancer, Mestas, who has been in ongoing treatment since her cancer recurred at the end of 2021, remains hopeful about all the advances in treatment over the past several years, with more to come in the pipeline. “They tell us, ‘You have an average of 10 years,’” she says. “In my mind I’m like, Okay, how much change can we make in 10 years? Will it be a 10-year average prognosis in 10 years? Will it be 20? It makes me very excited to see how things are moving and that the low-grade community is starting to become more [united] in our efforts, especially with the presence of STARR. It just makes me so excited to see what’s to come.”
