Guenevere is an ovarian cancer survivor in rural New Mexico.
Cancer research is extremely important to me. It’s my lifeline. My cancer is poorly understood, has a high rate of recurrence and there hasn’t been much success for a screening test. If it were a higher grade, I’d be dead. It is just that fast.
A few months after a routine wellness visit in 2023, Guenevere noticed a tiny lump and returned to her provider. Following a nonstandard ultrasound, testing revealed extremely high levels of the CA125 protein, which can indicate the presence of ovarian cancer.
She had a 7.5 hour surgery to remove as much cancerous tissue as possible. Pathology confirmed that while some of the tissue was borderline, the rest was stage 3A. She had low-grade serous ovarian cancer (LGSOC) – a rare type of ovarian cancer.
Following her surgery, Guenevere developed an internal bleed and had to be flown back to Houston, where she received the surgery, instead of being treated at her local hospital. A few weeks later, she began treatment at the University of New Mexico Comprehensive Cancer Center, a National Cancer Institute-designated comprehensive cancer center. She enrolled in a clinical trial – she was randomized into the arm that included 6 rounds of Taxol/Carbo chemotherapy to be followed by the drug Letrozole, an aromatase inhibitor that has been shown to slow down recurrence and growth by restricting estrogen.
Guenevere was unable to complete her original treatment plan due to an adverse reaction to both chemotherapy and the inhibitors. She experienced overwhelming joint and bone pain, and given concerns about the efficacy of chemotherapy for her type of cancer, her oncologist recommended she cease the treatment. As she currently has no evidence of disease, she and her oncologist chose to stop inhibitors unless the cancer resturns – which often happens with LGSOC. She continues to be observed by the clinical trial, but is no longer an active participant.
The rarity of her cancer means LGSOC patients are almost entirely reliant on experimental treatments and clinical trials. Tumor profiling, or genomic testing on the tissue removed during surgery, may point the way for researchers as they seek targeted immunotherapies for LGSOC. As she notes: “Any interruption to funding means we lose, literally, years – no funding doesn’t just mean the project is put on hold, it means much of what was hopefully being accomplished is lost for good, or will have to be restarted entirely. Most cancer patients don’t have that kind of time. We need research now, not later.”