My belly button saved my life

I knew what to look for, but I missed the signs.

I participated in an ovarian cancer awareness walk ten years before I was diagnosed with it, at the age of 44. I took home pamphlets describing it as a “silent killer” because most people don’t experience the symptoms, which include frequent urination, feeling full quickly, changes in bowel habits, bloating, fatigue, stomach upset, back pain, pain during sex, constipation and heavy periods.

Unfortunately, any of these symptoms can be a sign of something else. This is why we are often misdiagnosed and don’t know we have ovarian cancer until it is already advanced. It is incurable and often fatal.

For 10 years after the awareness walk, I didn’t notice any changes in my health that I thought were unusual. I continued to get Pap tests at the recommended intervals and began having annual mammograms at age 41, even though my primary care doctor advised me against it. “There are too many false positives,” she said.

It was a dermatologist, not a gynecologist, who diagnosed me. I had a small growth, the size and color of a pencil eraser, near my belly button. When the dermatologist removed it, he thought it was something harmless. The biopsy said otherwise.

The call came on April 1, 2020. That first day, all I could do was take a blood test. At this point in the pandemic, we didn’t know if we could contract COVID-19 from surfaces. I used my shirt sleeve to open doors, then woke up in the middle of the night wearing the same shirt and wondering if there was coronavirus on my sleeve.

The blood test revealed elevated levels of cancer antigen 125, a tumor marker that is not a completely reliable indicator of ovarian cancer. Too many false positives. And also false negatives. My scan a week later showed that each ovary had been invaded by tumors the size of a small citrus fruit, and I had a third tumor the size of a larger citrus fruit in the center of my abdomen. The cancer had spread to my belly button and belly button, which was, as far as I knew at the time, the only symptom I had.

There seem to be as many ways to detect cancer as there are people who have it. According to the American Cancer Society, that’s 1 in 78 people with ovaries, of all ages. One in 108 people will die.

A Pap test does not detect ovarian cancer, and there is no ovarian version of a mammogram. Some of the members of my online support groups discovered their cancer while they were pregnant or were trying to understand why they weren’t getting pregnant. Some had unusual bleeding or another emergent event that landed them in the hospital.

Countless other people have sought medical attention for the symptoms listed above, but have been misdiagnosed with irritable bowel syndrome, heartburn, diverticulitis, or menopause. Too many patients have been sent home thinking it was nothing, or that they were making a big deal out of it, or that it was their fault for being overweight.

We misdiagnose and avoid going to the emergency room for these same three reasons. I did it. Looking back, I had excruciating back pain six months before the diagnosis. I thought I hurt my back lifting my 85 pound elderly dog. I learned to lift with my legs and it pretty much disappeared. I can’t imagine a scenario in which my efforts to relieve lower back pain would have led me to ask about ovarian cancer.

More than a year after my diagnosis, after several months of being cancer-free, I remembered having sharp, intermittent chest pains for the past few years. My internet research at the time convinced me it was heartburn, probably from eating too much processed carbs and chocolate. Waiting at home was better than sitting in the ER for hours, and I never thought to tell anyone. I only realized it could have been a sign of ovarian cancer after 13 months of racking my brain trying to think of symptoms I had missed.

Had my belly button saved my life?

If my cancer hadn’t left my body through my belly button, it probably wouldn’t have been discovered until it had disrupted other critical organs like my liver, kidneys, or lungs. It could have been a death sentence.

When I met with my gynecologic oncologist via video conference, she told me, “Ovarian cancer is not curable, but it can be treated. »

My treatment began with three chemotherapy infusions, which caused my hair to fall out, before we discovered I had a rare subtype called low-grade serous ovarian cancer, which often does not respond to chemotherapy. My gynecologic oncologist told me, “The chemotherapy didn’t work as well as we hoped. »

I had to clarify: “You mean it didn’t work at all. »

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. She removed all the cancer she could see, and my blood tests after surgery showed decreased levels of CA-125 as well as another tumor marker called human epididymal protein 4 (HE4). Follow-up CT scans showed no signs of residual disease.

A common thing people ask at this point is, “So are you okay now?”

Ovarian cancer is considered a chronic disease. I risk having a recurrence eventually. Even with all of these organs removed, the cancer can come back elsewhere. But I don’t feel any closer to death than I did a year ago. If it comes back, I hope that ovarian cancer research has led to a treatment for all future expressions of my cancer.

The ovarian cancer ribbon is teal. I dyed my newborn hat teal and painted my nails to match before a September follow-up with my medical oncologist. The nurse who took my vitals complimented the coordination. “Thank you,” I said. “Ovarian Cancer Awareness Month.”

She paused in disinfecting the pulse oximeter and gave me a second look. “Why didn’t we know it was Ovarian Cancer Awareness Month? »

Perhaps for the same reason, I didn’t realize I had ovarian cancer, even though I had participated in an awareness walk. Ovarian cancer is a sneaky bitch.

Since my diagnosis, when I explain to my friends that a Pap test cannot detect ovarian cancer, I also give them an overview of the symptoms to watch for.

“I have it all,” they usually say.

I asked my gynecologic oncologist what he should do. Should they require a CA-125 blood test and abdominal ultrasound? No, she said. They should tell their doctor about their symptoms and ask, “Do you think this might have something to do with my ovaries?”

Then she told me that early detection does not improve ovarian cancer survival rates. It took me a while to understand. My understanding is that it doesn’t necessarily matter when we detect ovarian cancer if we don’t have a way to cure it.

Not only do we need the equivalent of a Pap test for our ovaries, but we also need more research to find a cure.

Kari Neumeyer is a writer and editor in the Pacific Northwest. When she’s not writing about cancer, she’s writing about dogs and salmon. She is working on a dissertation about her diagnosis and treatment of ovarian cancer. Her first memoir, “Bark and Lunge: Saving My Dogs from Training Mistakes,” was published in 2014. She holds a master’s degree in journalism from the Medill School at Northwestern University.

This article was previously published on HuffPost and is being shared again as part of the HuffPost Personal “Best Of” series.

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