Meg at chemo in 2023
Not the word I was expecting. Made sense, though; it gave me answers. I was sitting in “the little room” at the office of my new gynecologic oncologist. The nurse practitioner had just informed me that the PET scan I had ten days earlier showed cancer.
In 2014, as part of cancer staging surgery for stage 2 ovarian cancer, my omentum was removed, along with my ovaries, fallopian tubes, uterus, cervix, and thirty-seven lymph nodes, and I have had digestive issues ever since. However, none of my digestive tract had been removed.
It had become clear that living without an omentum was at least part of the cause for my post-surgery digestive issues. There is so much to learn about the normal functioning of this understudied organ. I tried to manage the symptoms to the best of my ability; I learned that certain strategies improved the situation (eating close to the ground; exercise) and other things aggravated the digestive issues (salty foods; sitting still). Despite my efforts, there were still flare-ups, and I could not figure out the trigger, hence the impetus to start The Omentum Project.
In January 2022, twelve months before this life-changing news of recurrence, my symptoms started. It took me several months to recognize that my symptoms were indeed different from the digestive symptoms I had previously experienced immediately following surgery in 2014. With doctor visits came tests—an upper endoscopy, a gallbladder scan, an intestinal test—all fine. I was seeing both a gynecologist and a medical oncologist; both listened. While neither doctor sent me for a PET or CT scan, there was another test that provided valuable information.
CA-125. An imperfect blood test for ovarian cancer. This test provides information for some women; for others, the test is not sensitive and not a usable marker. I am one of the individuals for which CA-125 is an indicator. The medical oncologist I was seeing did run my CA-125 regularly. I know this blood test is an imperfect test, however, it is known to fluctuate. Mine was not fluctuating; it was gradually increasing, gradually “ticking up.” The third time it came back with an increase, I requested to now see the new gynecologic oncologist at the same practice as my medical oncologist.
She was wonderful and promised to get answers to the digestive issues but said, “Let’s rule out cancer first.” She sent me for a PET scan. And that brings us back to the beginning.
Eight years NED (no evidence of disease); now recurrence. Some cancer cells escaped surgery and chemotherapy back in 2014 and 2015. Thankfully, my scans and numbers look good, and my gynecologic oncologist monitors me closely. “Watch you like a hawk,” in her words.
It does give me renewed determination to move forward with knowledge of the world of “Living without an Omentum.” The first step in this process is our IRB-approved online survey, “Processing Salt with/without an Omentum,” which includes a citizen science component: A one-time home experiment eating popcorn and taking measurements.
If you know women who would be willing to participate in The Omentum Project’s research study, please ask them to complete the Part 1 Eligibility Survey.
For more information, visit the “Eat Popcorn for Science” blog post.
I hope that in the future there will be guidelines for cancer survivors living without an omentum. The journey starts here.