A rare cancer diagnosis is a lonely thing. For those of us with low-grade serous ovarian cancer (LGSOC), the pain of isolation is amplified by a poor prognosis, knowing there are no specialized treatments for our disease.
In 2018, Jessica BeCraft’s cancer was discovered during an unplanned C-section for her daughter, Harper. At the time, she thought, “Low-grade means it must be early. I’m sure I’ll be fine.”
She would learn that “low-grade” does not refer to the severity of the disease, but rather the type of cells, which are slow-growing and persistent. Unfortunately, this slower growth makes LGSOC harder to treat because it often doesn’t respond to the drugs that target other ovarian cancers.
Discouraged by the lack of treatment options and research funding, in 2020, Jess brought together two other women with LGSOC to create the first nonprofit in the United States dedicated to improving outcomes for the disease — STAAR Ovarian Cancer Foundation. The acronym stands for “Survive. Thrive. Advocate. Advance Research.”
Creating more optimistic outcomes for others
Jess’s cancer was not caught early. It was stage 3C. She knew she might not survive long enough to benefit from research funded by STAAR, but she was committed to improving the prognosis for others.
Jess BeCraft passed away at age 37 in September 2021. Another of the co-founders, Alexandra Feldt, died a year earlier at age 34. The third, Bailey Wolfe, serves on STAAR’s all-volunteer board, which includes five other women with LGSOC.
What started with birthday fundraisers and a virtual Turkey Trot during the pandemic grew into a community where no one with LGSOC has to feel alone in their diagnosis.
In addition to contributing more than $600,000 so far to LGSOC research at leading institutions, STAAR has advanced understanding of the disease in collaboration with other organizations, including Cure Our Ovarian Cancer and the World Ovarian Cancer Coalition.
Last year, those partnerships led to the first-ever ovarian cancer patient meeting with the FDA and the first global survey about the patient impact of LGSOC.
A major takeaway from both is that although the cancer is rare, many have similar stories. The survey found that 99% of people had never heard of LGSOC before being diagnosed with it, and on average, it took nearly three years to get an accurate diagnosis.
Delayed diagnoses and improving education
Like other ovarian cancers, LGSOC has no early detection test and is frequently diagnosed in later stages because of a general lack of awareness about the most common symptoms, which can include bloating, changes in bowel and urination habits, menstrual irregularities, and back pain.
Another challenge that’s delaying diagnoses is that LGSOC affects a younger demographic. Half of diagnoses occur before age 45. Two-thirds of the women surveyed said their healthcare providers initially dismissed their symptoms. Many diagnoses were delayed because of a misconception that 20 or 30 is too young to have ovarian cancer.
This younger age range means most people with LGSOC are premenopausal. Low-grade serous cells have been found to be estrogen-sensitive, so many patients take a hormone blocker to try to slow or prevent cancer growth. These women are thrust into menopause decades ahead of their time, which affects fertility and libido. LGSOC literally steals years from their lives.
The low-grade community brought this to the attention of the federal agency responsible for evaluating new drugs during the patient meeting led by STAAR Board Chair Nicole Andrews.
“Our stories, experiences, and advocacy during the meeting served as a powerful catalyst,” says Andrews. “It brought attention to the urgent need for a deeper understanding of the challenges faced by those with low-grade serous ovarian cancer.”
