I knew what to look for, but I didn’t answer the signs.
I went on a walk in ovarian cancer awareness a decade before I was diagnosed here at age 44. I took home pamphlets describing it as a “silent killer” because most people miss the symptoms, which include frequent urination, rapid feeling full, changes in bowel habits, swelling, fatigue, abdominal distress, back pain, pain during intercourse, constipation and heavy periods.
Unfortunately, each of these symptoms can be a symptom of the other, so we are often misdiagnosed and don’t know we have ovarian cancer until it’s advanced. It is incurable and often fatal.
For 10 years after walking in consciousness, I haven’t noticed any changes in my health that I think are unusual. I continued taking Pap smears at the recommended intervals and started getting an annual mammogram at age 41, even though my primary care doctor advised me against it. “There are so many false positives,” he said.
It was a dermatologist, not a gynecologist, who diagnosed me. I have a small growth, the size and color of a pencil eraser, on my navel. When the dermatologist removed it, he thought it was something harmless. Otherwise the biopsy said.
The call came on April 1, 2020. On that first day, all I could do was test my blood. At this point of the pandemic, we don’t know if we can get COVID-19 from the surfaces. I used my shirt sleeve to open the doors, then woke up in the middle of the night wearing the same shirt and wondering if there was a coronavirus on my sleeve.
Blood testing found high levels of cancer antigen 125, a tumor marker that is not a completely reliable indicator of ovarian cancer. Lots of false positives. Even false negatives. My CT scan one week showed that each ovary was reached by lumps the size of small citrus fruits, and I had a third tumor the size of a larger citrus fruit in the center of my stomach. The cancer spread through my umbilical cord and out of my umbilical cord, which, to my knowledge at the time, was the only symptom I had.
There seem to be many ways to find cancer as many people have it. According to the American Cancer Society, that’s 1 in 78 people with ovaries, of all ages. One in 108 will die here.
A Pap smear does not detect ovarian cancer, and there is no ovarian version of a mammogram. Among the people in my online support groups, some have discovered their cancer while they were pregnant, or are trying to figure out why they didn’t get pregnant. Some had unusual bleeding, or another emerging event that landed them in a hospital.
Countless others have sought medical help for the symptoms listed above, but have been misdiagnosed with something like irritable bowel syndrome, heartburn, diverticulitis or menopause. Too many patients are sent home believing they don’t have it, or they’re making a huge deal out of it, or it’s their fault for being overweight.
We misdiagnosed ourselves, avoiding trips to the emergency room for both of those three reasons. I made. Come to think of it, I had severe back pain six months before I was diagnosed. I thought I pressed my back to lift my 85-thousand-year-old dog. I learned to lift my legs and most were gone. I can’t imagine a scenario where my efforts to relieve lower back pain could lead me to ask about ovarian cancer.
More than a year after my diagnosis, after several months without cancer, I remember recurring chest pain over the years. My internet research at the time convinced me that it was heartburn, most likely from excessive consumption of processed carbohydrates and chocolate. Waiting here at home is better than sitting in an emergency room for hours, and I never thought to mention it to anyone. I just figured it might be a sign of ovarian cancer after 13 months of attacking my brain trying to think of symptoms I missed.
Did my navel save my life?
If my cancer hadn’t found my way out of my body through my navel, it probably wouldn’t have been discovered until after it had interfered with other vital parts of the body such as my liver, kidneys or lungs. It can be a death penalty.
When I met my gynecologic oncologist about the videoconference, he told me, “Ovarian cancer is incurable, but it can be cured.”
My treatment began with three infusions of chemotherapy, which dropped my hair out, before we discovered that I had a rare subtype called low -grade serous ovarian cancer, which often did not respond to chemotherapy. My gynecologic oncologist said, “The chemotherapy didn’t work as well as we expected.”
I need to clarify, “You mean it didn’t work.”
In June 2020, my surgeon removed my ovaries, fallopian tubes, uterus, omentum, cervix, and 10 inches of colon because (surprise!) One of the ovarian tumors had perforated my colon. He removed all the cancer he could see, and work on my blood after surgery showed reduced levels of CA-125 as well as another tumor marker called human epididymis protein 4 (HE4). Follow-up CT scans showed no evidence of residual disease.
One common thing people ask at this point is, “So you’re good today?”
Ovarian cancer is considered a chronic disease. I will probably have a recurrence eventually. Even with the removal of all those organs, the cancer can return elsewhere. But I didn’t feel any closer to dying than a year ago. If it comes back, by the time it comes back, I hope ovarian cancer research will lead to treatment for all future manifestations of my cancer.
The ribbon for ovarian cancer is severe. I dyed my newborn hair tal cover and painted my nails to match before a September follow-up with my medical oncologist. The nurse who took my vitals praised the coordination. “Thank you,” I said. “Ovarian Cancer Recognition Month.”
He stopped his pulse oximeter disinfection and gave me a second look. “Why don’t we know that Ovarian Cancer Awareness Month?”
Maybe for the same reason I didn’t realize I had ovarian cancer, even though I was on a walk of consciousness. Ovarian cancer is a sneaky bitch.
Because of my diagnosis, when I tell my friends that a Pap smear doesn’t detect ovarian cancer, I also give them a rundown of the symptoms to watch out for.
“I have all of that,” they usually say.
I asked my gynecologic oncologist what they should do. Should they request a CA-125 blood test and abdominal ultrasound? No, he said. They should tell their doctors about their symptoms and ask, “Do you think it might have something to do with my ovaries?”
Then he told me that Early screening does not improve ovarian cancer survival rates. It took me a while to wrap my head around it. My understanding is not necessarily that important when we find ovarian cancer if we have no way to cure it.
Not only do we need the equivalent of a Pap smear for our ovaries, we also need more research to find a cure.
Kari Neumeyer is a writer and editor in the Pacific Northwest. When he’s not writing about cancer, he’s writing about dogs and salmon. She makes a memoir about her ovarian cancer diagnosis and treatment. Her first memoir, “Bark and Lunge: Saving My Dogs from Training Mistakes,” was published in 2014. She has a master’s degree in journalism from Northwestern University’s Medill School.
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