The author, Cassie Fox, and her mother, Sandi Monserrat
September, 2011. Deep in the throes of morning sickness with my second baby, I got a call from my mom, asking me to sit down. The week before, she had texted me a photo of her bloated belly with the caption, “I look six months pregnant??!” My reply still makes me cringe. I had written back “Menopause lol.”
It wasn’t menopause. It was stage IIIC ovarian cancer.
Cancer is a numbers game. From the moment a diagnosis is received, life shrinks down to endless combinations of 0-9: tumor markers, blood counts, proteins, ratios, enzymes, white blood cells. For “silent killer” cancers like ovarian, the numbers are particularly grim. Consider the following:
About 22,240 women will receive a new diagnosis of ovarian cancer in 2018.
About 14,070 women will die from ovarian cancer in 2018.
A woman’s risk of getting ovarian cancer during her lifetime is about 1 in 78.
Only 1 out of every 5 women diagnosed with ovarian cancer catch it in the early stages.
60% of all cases of ovarian cancer are diagnosed when they are stage III.
For all types of ovarian cancer, the five-year relative survival is 47%.
I started searching for hope while I was still on the phone with my mom, Googling frantically. “Ovarian cancer stage 3 survival.” “How long to live with ovarian cancer.” “Treatment for ovarian cancer late stage.” I read dozens of facts and figures while she talked me through the plan for a radical hysterectomy, the size of her tumor, her doctor’s credentials. Not a single result could give me an answer to what I was really asking, though, which was simply: “How will I ever live without her?”
She made it almost four years to the day after her diagnosis. That spring, she developed a second primary cancer in her breast, and later that summer, they discovered a large, inoperable abdominal tumor. Her body was as fragile as glass in her final days, her head covered with an inch of new hair that was heartbreakingly soft. I sang “Amazing Grace” to her, my voice cracking on every other word, and her last breath seemed to go on forever.
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Looking at the research on ovarian cancer can be disheartening. My mother dying from it means my own risk of developing it increases fourfold. Although the greatest risk factor is age — about half of all women diagnosed with ovarian cancer are 63 years of age or older — women of all ages can and do get it. My own mom was only 52 when she was diagnosed. I just turned 40. There is no reliable screening test for ovarian cancer, so what can I do to protect myself? What can any of us do?
As the third anniversary of my mother’s death drew near, I reached out to her last doctor, hoping for some advice, and perhaps some reassurance. Dr. Joseph Santoso, an OB-GYN with Baptist Medical Group, specializes in gynecologic oncology, and he’s made a name for himself as one of the best doctors in Memphis. Warm and welcoming without being patronizing, uplifting and positive without being unrealistic, he is extremely popular with his patients and their families. I wanted to know, how can we protect ourselves against a disease we never even see coming?
Intuition, mainly, and an established relationship with your physician, Santoso tells me. Because so many of the symptoms associated with ovarian cancer are non-specific, women often ignore any signs of illness until it’s too late. Occasional bloating, abdominal pain, and pelvic discomfort are easy enough to write off, but Santoso stresses the importance of paying attention to any persistent symptoms. Anything out of the ordinary for you that lingers or worsens should never be ignored. This is where it pays to have a trusted healthcare provider who will take your concerns seriously and investigate them thoroughly. Something as simple as an ultrasound can detect any abnormalities, setting your mind at ease or confirming the need for further discussion and treatment.
Living with an increased risk of not only ovarian cancer, but breast cancer as well, I keep up with trends in treatment. For ovarian cancer, treatment options are by and large the same as they are for other cancers. Surgery is generally the first step, removing anything the cancer has touched, followed by standard chemotherapy. Some candidates aren’t strong enough to handle surgery first, so the treatment script gets flipped. Ovarian cancer often recurs, sometimes within a year or two, most others within a five-year window, yet I’ve read promising things about new treatments like immunotherapy. I asked Dr. Santoso if there was anything exciting on the horizon when it comes to treating ovarian cancer, and as it turns out, there is.
Because most ovarian cancer is found in the later stages, most treatment doesn’t have a curative focus. Instead, it works to interrupt the numbers game by skewing averages and disrupting percentages. Maybe the five-year outlook becomes seven, seven becomes ten, and who knows what progress will be made in the meantime? Immuno-oncology agents are a unique approach to treatment that work with the body’s immune system to remove the cancer cells while keeping healthy cells intact. Some amazingly innovative work is also being done with the targeted delivery of chemotherapy into particular cancer cells. Though both are still in the research and trial phase, the eventual goal is to help patients live better, longer lives through more effective, less toxic treatment. If a single thread of hope is a powerful thing, then whole balls of yarn are waiting in the wings of research centers and laboratories all over the world.
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For a long time, I wondered what could have caused my mother’s cancer. Was it the baby powder her grandma taught her to use after she showered? (There is no definitive link between talcum powder use and ovarian cancer.) Could it have been her refusal to ever use hormonal birth control? (Some studies have shown that women who use oral contraceptives for five or more years have about a 50 percent lower risk of developing ovarian cancer.) Was it just a roll of the genetic dice? (The BRCA gene mutation test can predict if you’re likely to have one of the gene mutations associated with an increased risk of ovarian cancer.) The unfortunate thing about cancer is how it forces you to become an expert after the fact. If she’d trusted her body more, learned to listen to it, would she have picked up on her symptoms earlier? I’ll never know.
Santoso says it’s not unusual for women to talk themselves out of knowing there’s something wrong with them. Maybe it’s a fear of being wrong, or maybe it’s a fear of being right, but learning to trust our instincts could literally save our lives. Believing in your body and advocating for your health is the key to catching a silent killer like ovarian cancer early. It may be too late for my mom, but losing her has taught me that even the smallest whisper is worth listening to when our intuition is trying to tell us a story. We just have to be willing to hear it.
Cassie Fox is a freelance writer, sometimes photographer, and full-time daydreamer who has finally learned to embrace her Southern roots but still refuses to listen to any country music made after 1996.