I knew what to look for, but I missed the signs.
I went to ovarian cancer awareness a decade before I was diagnosed at the age of 44. I took home a pamphlet describing it as a “silent killer” because most people miss the symptoms, which include frequent urination, feeling full quickly. changes in bowel habits, bloating, fatigue, upset stomach, back pain, pain during sex, constipation and heavy periods.
Unfortunately, each of these symptoms can be a sign of something else, 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 the awareness walk, I did not notice any changes in my health that I thought were unusual. I continued to get Pap smears at the recommended intervals and started getting mammograms every year at age 41, even though my primary doctor advised against it. “There are too 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 harmless. The biopsy said otherwise.
The call came on April 1, 2020. The first day, all I could do was a blood test. At this time of the pandemic, we do not know whether it is possible to contract COVID-19 from the surface. I use my sleeve to open the door, then wake up in the middle of the night in the same shirt and wonder if I have the coronavirus on my arm.
A blood test found high levels of cancer antigen 125, a tumor marker that is not a reliable indicator of ovarian cancer. Too many false positives. Also false negatives. My CT scan a week later showed that each ovary had been overtaken by a tumor the size of a small orange, and I had a third tumor the size of a larger orange in the middle of my abdomen. The cancer had spread through my umbilicus and out my navel, which as I knew at the time, was the only symptom I was experiencing.
It seems there are as many ways to find cancer as there are people with cancer. According to the American Cancer Society, it is 1 in 78 people with ovarian cancer, of all ages. One in 108 will die.
A Pap smear does not detect ovarian cancer, and there is no version of an ovarian mammogram. Among the people in the online support group, some were diagnosed with cancer while they were pregnant, or trying to figure out why they didn’t get pregnant. Some have unusual bleeding, or other events that land them in the hospital.
Many other people seek medical help for the symptoms mentioned above, but are misdiagnosed as irritable bowel syndrome, heartburn, diverticulitis or menopause. Too many patients are sent home because they believe that nothing is wrong, or that they are causing too much trouble, or that they are mistaken because they are overweight.
We misdiagnose ourselves, avoiding trips to the emergency room for the same three reasons. Me. In hindsight, I had back pain for six months before being diagnosed. I thought I’d strained my back lifting my 85-pound old dog. I learned to lift with my legs and mostly lost. I can’t imagine a scenario where my efforts to relieve lower back pain would lead me to ask about ovarian cancer.
More than a year after my diagnosis, after months of being cancer free, I remember the constant chest pains I’d had in recent years. My internet research at the time convinced me that it was starting to cause liver disease, most likely from excess carbs and processed chocolate. Waiting at home was better than sitting in the emergency room for hours, and I never told anyone. It just occurred to me that this could have been a sign of ovarian cancer after 13 months of racking my brain trying to think of symptoms I missed.
Did my stomach save my life?
If my cancer couldn’t leave the body through the navel, it probably wouldn’t be discovered until after it had invaded other vital organs like the liver, kidneys or lungs. There may be a death sentence.
When I met with a gynecologic oncologist via videoconference, he said, “Ovarian cancer is incurable, but it is treatable.”
My treatment began with three infusions of chemotherapy, causing my hair to fall out, before discovering that I had a rare subtype called low-grade serous ovarian cancer, which often does not respond to chemotherapy. My gynecologic oncologist said, “Chemotherapy isn’t working as well as it should.”
I should clarify, “You mean it doesn’t work.”
In June 2020, my surgeon removed my ovaries, fallopian tubes, uterus, omentum, cervix, and 10 inches of my colon because (surprise!) one of my ovarian tumors had invaded my colon. They removed all the cancer they could see, and my blood work after surgery showed a drop in CA-125 levels as well as another tumor marker called human epididymal protein 4 (HE4). Follow up CT scan showed no evidence of residual disease.
A common question for people to ask at this time is, “So you’re good now?”
Yes and no.
Ovarian cancer is considered a chronic disease. I’m likely to have a recurrence eventually. Even with the removal of the entire organ, the cancer can return elsewhere. But I don’t feel any closer to dying than I did last year. If it comes back, when it comes back, I hope ovarian cancer research will lead to treatments for all expressions of cancer in the future.
The ribbon for ovarian cancer is teal. I dyed my new baby teal hair cap and painted my nails to match before the September follow-up with medical oncology. The nurse who took my vitals praised the coordination. “Thank you,” I said. “Ovarian Cancer Awareness Month.”
He paused in disinfecting the pulse oximeter and gave me another look. “Why don’t we know it’s Ovarian Cancer Awareness Month?”
Maybe for the same reason I didn’t know I had ovarian cancer, even though I was walking around with awareness. Ovarian cancer is a sneaky dog.
Since my diagnosis, when I tell my friends that a Pap smear cannot detect ovarian cancer, I also give them a list of symptoms to watch out for.
“I have it all,” they used to say.
I asked my gynecologic oncologist what to do. Should I get a CA-125 blood test and an abdominal ultrasound? No, he said. She should tell her doctor about these symptoms and ask, “Do you think it has something to do with the ovaries?”
Then they told me that early screening does not increase the survival rate of ovarian cancer. That took a while to wrap my head around. My understanding is that it is not necessary that we detect ovarian cancer if there is no way to treat it.
Not only do we need the same pap smear as the ovaries, we also need more research to find a cure.
Kari Neumeyer is a writer and editor in the Pacific Northwest. When he wasn’t writing about cancer, he was writing about dogs and salmon. She is working on a memoir about the diagnosis and treatment of ovarian cancer. His first memoir, Bark and Lunge: Saving My Dogs from Training Mistakes, was published in 2014. He has a master’s degree in journalism from Northwestern University’s Medill School.
This article first appeared on HuffPost.
