My Belly Button Saved My Life

I knew what to search for, however I missed the indicators.

I went to an ovarian most cancers consciousness stroll a decade earlier than I used to be recognized with it on the age of 44. I took residence pamphlets describing it as a “silent killer” as a result of most individuals miss the signs, which embrace frequent urination, feeling full rapidly, modifications in bowel habits, bloating, fatigue, upset abdomen, again ache, ache throughout intercourse, constipation and heavy durations.

Sadly, each one among these signs could possibly be an indication of one thing else, so we are sometimes misdiagnosed and don’t know we’ve got ovarian most cancers till it’s already superior. It’s incurable and infrequently deadly.

For 10 years after the attention stroll, I didn’t discover any modifications to my well being that I believed had been uncommon. I continued getting Pap smears on the really useful intervals and commenced getting yearly mammograms at age 41, though my main care physician suggested towards it. “There are too many false positives,” she mentioned.

It was a dermatologist, not a gynecologist, who recognized me. I had a small development, the scale and colour of a pencil eraser, in my navel. When the dermatologist eliminated it, he thought it was one thing innocent. The biopsy mentioned in any other case.

The decision got here on April 1, 2020. That first day, all I may do was get my blood examined. At this level within the pandemic, we didn’t know if we may get COVID-19 from surfaces. I used my shirt sleeve to open doorways, then awakened in the midst of the night time carrying the identical shirt and questioning whether or not there was coronavirus on my sleeve.

The blood take a look at discovered elevated ranges of most cancers antigen 125, a tumor marker that isn’t a wholly dependable indicator of ovarian most cancers. Too many false positives. Additionally false negatives. My CT scan per week later confirmed that every ovary had been overtaken by tumors the scale of small citrus fruit, and I had a 3rd tumor the scale of a bigger citrus fruit within the middle of my stomach. The most cancers had unfold up by my umbilicus and out my navel, which was, so far as I knew on the time, the one symptom I had.

There appear to be as some ways to search out the most cancers as there are individuals who have it. According to the American Cancer Society, that’s 1 in 78 folks with ovaries, of all ages. One in 108 will die of it.

A Pap smear doesn’t detect ovarian most cancers, and there’s no ovarian model of a mammogram. Among the many folks in my on-line assist teams, some found their most cancers whereas they had been pregnant, or making an attempt to determine why they weren’t getting pregnant. Some had uncommon bleeding, or one other emergent occasion that landed them in a hospital.

Numerous others sought medical assist for the signs listed above, however had been misdiagnosed with one thing like irritable bowel syndrome, heartburn, diverticulitis or menopause. Too many sufferers had been despatched residence believing it was nothing, or they had been making too large a deal out of it, or it was their fault as a result of they had been chubby.

We misdiagnose ourselves, avoiding journeys to the emergency room for those self same three causes. I did. In hindsight, I did have excruciating again ache six months earlier than I used to be recognized. I believed I’d strained my again lifting my 85-pound aged canine. I discovered to carry with my legs and it largely went away. I can’t think about a situation the place my efforts to alleviate decrease again ache would have led me to ask about ovarian most cancers.

Greater than a 12 months after my analysis, after a number of months being cancer-free, I recalled intermittent sharp chest pains lately. My web analysis on the time satisfied me it was heartburn, almost certainly from overindulging in processed carbohydrates and chocolate. Ready it out at residence was preferable to sitting in an emergency room for hours, and I by no means thought to say it to anybody. It solely occurred to me that this might have been an indication of ovarian most cancers after 13 months of racking my mind making an attempt to consider signs I missed.

Had my stomach button saved my life?

If my most cancers hadn’t discovered its approach out of my physique by my navel, it most likely wouldn’t have been found till after it disrupted different important organs like my liver, kidneys or lungs. It may have been a loss of life sentence.

Once I met my gynecologic oncologist over videoconference, she advised me, “Ovarian most cancers isn’t curable, however it’s treatable.”

My remedy started with three chemotherapy infusions, making my hair fall out, earlier than we found that I had a uncommon subtype referred to as low-grade serous ovarian most cancers, which frequently doesn’t reply to chemotherapy. My gynecologic oncologist mentioned, “The chemotherapy didn’t work in addition to we hoped.”

I needed to make clear, “You imply it didn’t work in any respect.”

In June 2020, my surgeon eliminated my ovaries, fallopian tubes, uterus, omentum, cervix, and 10 inches of colon as a result of (shock!) one of many ovarian tumors had perforated my colon. She eliminated all of the most cancers she may see, and my blood work following surgical procedure confirmed lowered ranges of CA-125 in addition to one other tumor marker referred to as human epididymis protein 4 (HE4). Observe-up CT scans have proven no proof of residual illness.

A typical factor for folks to ask at this level is, “So that you’re good now?”

Ovarian most cancers is taken into account a power sickness. I’m more likely to have a recurrence ultimately. Even with the elimination of all these organs, the most cancers can come again elsewhere. However I don’t really feel any nearer to dying than I used to be a 12 months in the past. If it comes again, by the point it comes again, I hope ovarian most cancers analysis can have led to remedy for all future expressions of my most cancers.

The ribbon for ovarian most cancers is teal. I dyed my new child cap of hair teal and painted my nails to match earlier than a September follow-up with my medical oncologist. The nurse who took my vitals complimented the coordination. “Thanks,” I mentioned. “Ovarian Most cancers Consciousness Month.”

She paused in her disinfecting of the heartbeat oximeter and gave me a re-examination. “Why didn’t we all know that it’s Ovarian Most cancers Consciousness Month?”

Possibly for a similar motive I didn’t understand I had ovarian most cancers, though I’d been to an consciousness stroll. Ovarian most cancers is a sneaky bitch.

Since my analysis, once I inform my buddies {that a} Pap smear can’t detect ovarian most cancers, I additionally give them the rundown of the signs to look at for.

“I’ve all of these,” they often say.

I requested my gynecologic oncologist what they need to do. Ought to they demand a CA-125 blood take a look at and stomach ultrasound? No, she mentioned. They need to inform their medical doctors about their signs and ask, “Do you suppose it may have one thing to do with my ovaries?”

Then she advised me that early screening does not improve ovarian cancer survival rates. That took me a while to wrap my head round. My understanding is that it doesn’t essentially matter once we detect ovarian most cancers if we don’t have a strategy to remedy it.

Not solely do we want the equal of a Pap smear for our ovaries, we additionally want extra analysis to discover a remedy.

Kari Neumeyer is a author and editor within the Pacific Northwest. When she’s not writing about most cancers, she writes about canines and salmon. She is engaged on a memoir about her ovarian most cancers analysis and remedy. Her first memoir, “Bark and Lunge: Saving My Canine from Coaching Errors,” was printed in 2014. She has a grasp’s diploma in journalism from Northwestern College’s Medill College.

Do you may have a compelling private story you’d prefer to see printed on HuffPost? Discover out what we’re searching for here and send us a pitch!