After Julie Gellert suffered with severe abdominal symptoms for almost 10 years, doctors still had "no explanation" for her condition—until she saw a primary care physician who was "determined to figure out what was wrong," Sandra Boodman writes for the Washington Post.
In 2010, Gellert was experiencing severe acid reflux that was not responding to medication. After she underwent an operation to strengthen her esophagus and prevent the backup of stomach acid, "she developed severe nausea and frequent diarrhea that resulted in several hospitalizations," Boodman writes.
After her gastroenterologist (GI) told her he could not determine the cause of her symptoms, she went to a new specialist who believed her vagus nerve had been damaged during the surgery, resulting in gastroparesis.
However, she had been experiencing frequent diarrhea, which is not typically a symptom of gastroparesis. Still, when the new doctor said Gellert might have an atypical presentation, Gellert recalled that it "didn't make much sense to me but I accepted that answer for the time being."
A GI specialist at another hospital agreed that Gellert had gastroparesis and suggested she start taking domperidone—a drug that is only prescribed under restricted circumstances to certain patients. Gellert had a port placed in her chest to allow her to self-administer an intravenous anti-nausea drug.
Six months later, her nausea and vomiting had improved significantly, and the port was removed. However, she was still experiencing diarrhea—but none of her doctors could determine the cause. Throughout the next few years, Gellert was hospitalized several times.
"Every test I did came back with no explanation for the diarrhea," Gellert said.
While her doctors were puzzled, they ultimately told her that even though diarrhea is not typically associated with gastroparesis, "in your case it must be," she recalled.
In 2015, Gellert started experiencing severe abdominal pain that was attributed to the gastroparesis. At the time, she was seeing a fourth GI specialist. They recommended that Gellert "discontinue the domperidone and recommended injections of Botox into the pylorus, the valve that opens and closes during digestion," Boodman writes.
Initially, Gellert said she felt better after the procedure. However, the following morning she awoke with a pain "worse than labor."
"After several days her abdominal pain eased considerably, but the diarrhea continued," Boodman writes.
According to Gellert, the fourth GI specialist "was very sympathetic and worked hard to figure out what was wrong."
However, when a scan showed that a previous GERD surgery had come undone, he advised a repeat operation—but Gellert resisted. "I said 'No one's going to go in there again,'" she recalled.
"So began a cycle," Boodman writes. "When the abdominal pain became unbearable Gellert said she would call the doctor's office, make an appointment with one of the physician assistants and beg for help."
"I kept telling them this is debilitating," Gellert said. Over time, Gellert noticed that their reactions were becoming less sympathetic. "It seemed clear that they thought she was exaggerating," Boodman writes.
"Periodically she would be sent for X-rays or CT scans that failed to uncover anything new or meaningful," Boodman adds. "Gellert said she managed as best she could and was relieved that her employer was understanding about her absences."
"It was really hard," said Gellert. "I spent a lot of time in the bathroom feeling very, very ill."
Then, an insurance change in 2018 led Gellert to see a new family physician. "She found him to be unusually empathic; he seemed determined to figure out what was wrong," Boodman writes.
By 2018, Gellert's condition had worsened—her vomiting seemed to occur with "no trigger," often waking her from a deep sleep.
"It was that rapid," Gellert said. "There was no running" to the bathroom. "I had to be prepared," storing barf bags around her apartment.
In addition, Gellert was experiencing "new and seemingly unrelated problems," Boodman writes. "Although she had gone through menopause several years earlier, she developed hot flashes, unexplained facial flushing and extreme fatigue."
At the end of 2019, Gellert's primary care doctor sent her for another CT scan, which revealed a seven-millimeter tumor "slightly larger than a pencil eraser" on her pancreas. The tumor was a rare pancreatic neuroendocrine tumor (pNET), which are typically malignant.
"I was really in shock," said Gellert, who remembers bursting into tears. "The idea that I might have cancer had certainly gone through my mind," she said.
Gellert's primary care doctor send her to an oncologist, who ordered a specialized PET/CT scan, called a dotatate scan, to confirm the diagnosis.
"This scan is highly specific for neuroendocrine tumors," said oncologist Satya Das, who is affiliated with the neuroendocrine tumor program at Vanderbilt University's Ingram Cancer Center. "If you just get a CT scan, you're going to miss it."
"Neuroendocrine tumors are both 'zebras' — medical slang for a rare malady — and 'great imitators' because some of the symptoms they trigger, such as diarrhea, have many causes," Boodman writes.
Ultimately, Gellert's oncologist gave her two options—undergo surgery to remove the cancer or closely monitor the tumor. Gellert elected to have the surgery.
"In March 2020 she underwent a distal pancreatectomy, an operation that removes the tail and body of the pancreas," Boodman writes.
Her cancer was classified as a grade 1—the most favorable prognosis—and it had not yet spread to her liver or lymph nodes. "Surgery was the only treatment required," Boodman writes. However, "[b]ecause pNETs can recur, Gellert will be monitored for 10 years," she adds.
"I feel much better than I did before," Gellert said.
While Gellert said she considers herself lucky that her cancer did not metastasize before it was discovered, Gellert said she wishes her doctors had considered that her symptoms were the result of a "zebra," Boodman writes.
"I'm not sure there was much more I could have done. I pushed my doctors pretty hard," Gellert said. "It's really important to find a doctor who's determined to get to the root cause of an issue." (Boodman, Washington Post, 12/17)
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