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Annie Tolentino suffered from ovarian cancer symptoms for six months before doctors could provide her with an accurate diagnosis. She was at stage three by then. But she’s not the only one who has had to wait that long.
“Unfortunately, only about 20% of ovarian cancers are found at an early stage,” said Dr. Marie Holzapfel, an OB/GYN at Kaiser Permanente with a specialty in oncology.
Like many women, Tolentino’s symptoms were initially misattributed to less severe conditions.
By the time doctors confirmed her cancer, critical months had passed.
Tolentino’s story is not unique in that sense — ovarian cancer is notoriously hard to detect early, with many women facing similar challenges. According to the American Cancer Society, ovarian cancer is one of the leading causes of cancer deaths among women.
Tolentino became familiar with what the symptoms of ovarian cancer look like after her mom was diagnosed with stage four in 2016.
“So that experience taught me a lot about the disease because I was her main caregiver, and I was the one talking to the nurses and the doctors,” said Tolentino, a senior director at Oracle in Redwood Shores.
After multiple cycles of chemotherapy, just as her mom was finishing her treatment, Tolentino started experiencing the same symptoms.
She first saw the signs in August 2016. It started with a sharp pain in her abdomen, followed by multiple periods in a month and bladder issues. When she went to her primary care doctor, they gave her pain medication and ruled it out as fiber deficiency. When the symptoms continued, her gynecologist asked her to get an HPV test and a pap smear that was used for cervical screening. All the tests came back negative.
“I knew that something was wrong because I saw my symptoms as a repetition of what I’ve seen from my mom. And so I was very actively talking to my primary care physicians about this, and they didn’t know anything,” said Tolentino.
According to Holzapfel, there is no screening or early detection test for ovarian cancer. A pap smear is designed for the cervix, which is on the outside, so it can very rarely detect ovarian cancer and only in cases of a very advanced stage. She added how many early ovarian cancers are also not detectable on pelvic exams either.
After a few months, Tolentino’s belly grew bigger. She insisted on a vaginal ultrasound, CT Scan and a CA 125 blood test that measures the amount of cancer antigen in blood. In February 2017, she tested positive for ovarian cancer at the age of 42. She immediately underwent a total hysterectomy.
“That’s why it’s so important for a woman to understand her body and understand where her parts are and what symptoms can develop,” Holzapfel added.
She cites some of the symptoms as nausea or bloating, loss of appetite, abdominal pelvic pain and abdominal distension. They can also include missing your period for over two months or getting multiple periods in a month, even if that includes spotting. She emphasizes going to the doctor if you feel something is different in your belly and has lasted longer than two weeks.
“Women really need to advocate for themselves,” she said.
Six weeks after the surgery, Tolentino was put on a regimen of six cycles of chemotherapy. She was prescribed two chemo drugs, Carboplatin and Paclitaxel. As soon as she was infused with the drugs, she felt her chest palpitate; she couldn’t breathe, and her entire body was hot. She was allergic to Paclitaxel.
When the doctors tried another chemo drug, she had the same allergic reaction. To deal with this, the doctors slowed down her treatment by reducing the number of drips she was receiving per second. While other patients spent two to three hours in the infusion center for the same liquid infusion, her sessions stretched to seven hours. She finished chemotherapy in 2017.
She was in remission for some time until the cancer came back in 2019, and had to undergo chemo again, which ended in 2020. Since then, Tolentino has been on an oral chemotherapy drug.
“We have new treatments available that have dramatically changed overall survival and how women are doing, and though it’s still challenging to get rid of it completely, ovarian cancer is often very treatable with a high chance of remission,” said Holzapfel in an interview with the Pulse. “In some ways, it’s become almost more of a chronic disease for some people.”
She believes that increased investment in ovarian cancer research could impact treatment outcomes by potentially finding ovarian cancer mutations and developing more targeted treatments.
Last month, on Aug. 5, the California State Assembly approved Assembly Concurrent Resolution (ACR) 221, authored by Assembly member Diane Papan, recognizing September 2024 as Ovarian Cancer Awareness Month in California.
“In addition to screening, we must prioritize research into diseases impacting women, such as ovarian cancer,” said Papan. “Investing in research not only enhances our understanding of these conditions but also paves the way for improved treatments and, ultimately, cures.”
Since 2017, Tolentino has continued her affiliation with Bay Area Cancer Connections, which she first sought out as a resource following her diagnosis. She is also a member of the Ovarian Cancer Research Alliance. She has often shared her story with healthcare students at universities and colleges to raise more awareness about what ovarian cancer can look like.
“Because with ovarian cancer patients, many symptoms are very vague and very common, and somehow also very similar to the symptoms that women experience when we’re having our period, or when we’re stressed, or when our hormones are not balanced,” she added.
Today, Tolentino lives in the East Bay with her husband and three kids. Her mom died at the age of 60 when the cancer came back and affected her liver.
“Some stories have a happy ending and other stories don’t, but that’s why it’s so important to talk about it,” she added.
For more information on Ovarian Cancer Awareness Month and efforts to combat this disease, please visit ovarian.org.
