At 33, Emily Campbell faced a diagnosis no one is prepared to hear: borderline serous ovarian cancer. What followed was an unflinching look at how unprepared the healthcare system is for patients with this rare and often misunderstood disease. Her experience revealed a harsh truth: patients are not only fighting cancer but also systemic overwhelm, lack of awareness, and outdated treatment protocols.
“Women that do present with ovarian cancer symptoms like bloating, constipation, pelvic pain, or back pain are often sent home,” she explains. “They’re misdiagnosed with indigestion or stress. Anything that would not normally be a concern.”
Today, Campbell is the Executive Director of Not These Ovaries, an early stage organization she co-founded with her husband Chris. Their mission is to fund urgently needed research into rare forms of ovarian cancer like low grade serous and borderline ovarian cancers, while also helping patients navigate the convoluted diagnostic and treatment process through their blog.
The Deadliest Women’s Cancer Few Talk About
Ovarian cancer is rare compared to other cancers: one in 91 women will be diagnosed in their lifetime, compared to one in eight for breast cancer. It is also the deadliest of all gynecologic cancers and ranks as the fifth deadliest cancer in women overall.
“It’s normally caught in an advanced stage because symptoms either don’t show up until it’s too late or mimic other benign conditions,” says Campbell. “There’s this awareness gap and education gap, both for women like myself and for physicians.”
This gap is compounded by systemic underfunding. Women’s health has historically lagged behind men’s in research investment. Take vehicle safety: an anatomically correct female crash test dummy was not introduced in crash testing until 2022. That same neglect extends to ovarian cancer research, where the standard chemotherapy protocol still relies on drugs developed in the 1970s and 1980s. For patients with a rare type of ovarian cancer, low-grade serous ovarian cancer, 80 percent will experience recurrence even after treatment.
Barriers for Younger Women
For younger women, the diagnosis carries unique consequences. Alongside the threat to survival comes premature menopause, infertility, and career disruption. Financial instability and lack of established resources can make treatment even more challenging.
Perhaps the greatest barrier is that there is no early screening test. Diagnosis can only happen through a surgical biopsy, typically performed once symptoms are present, which is usually not until the cancer has advanced. “The significant barriers are just the lack of funding for early detection treatments and cures,” Campbell stresses. “Any cancer caught early opens up more options. If it’s caught late, there are fewer.”
Building Momentum Through Funding and Advocacy
Despite these challenges, Not These Ovaries has already raised over $2 million to support research into borderline and low-grade serous ovarian cancers. These funds help laboratories run clinical trials and test new approaches, particularly for patient groups with limited treatment options.
Everyone has a role to play, and education and advocacy remain central to the organization’s mission. Women must recognize persistent symptoms and feel empowered to demand answers, while physicians need to shed biases that dismiss younger women as unlikely cancer patients.
“Advocacy is not one-size-fits-all,” she says. “Some people donate financially, others volunteer, share resources, or simply talk about us in their community. The best advocacy is what the person feels comfortable doing.”
The Promise of AI in Research
Emerging technologies could help bridge the gap in progress. Campbell is “cautiously optimistic” about artificial intelligence, which she sees as an accelerator in medical research when applied responsibly. “Researchers we’ve funded are using AI with tumor banks to test different drug protocols much faster than humans ever could,” she explains. “The question is, how do we speed up the process so that better treatments reach patients sooner?”
By allowing thousands of variations to be modeled simultaneously, AI could drastically reduce the time needed to evaluate potential therapies, particularly for rare cancers where recurrence rates remain high.
A Call to Action
The path forward must focus on greater funding, wider awareness, and broader participation. Her own journey underscores what is at stake. Without systemic change, too many patients will continue to face misdiagnosis, limited treatment, and preventable loss of life. “Ovarian cancer is not talked about enough. We’re behind, and we need to keep the momentum going,” she says.
Readers can connect and learn more about Not These Ovaries via their website.
