Since the beginning of my symptoms—occasional pain on the upper left side of my abdomen, accompanied at times by nausea—which started nearly 20 years ago, my condition, pancreatic neuroendocrine tumor, either remained undetected or was completely misdiagnosed until just recently. A series of diagnostic tests over the years, including a colonoscopy, barium enema, and three endoscopies failed to show any gastrointestinal disease.
Four years ago, the pain in the left area of my abdomen became so strong, my primary care physician finally sent me for a CT scan. The results showed a mass in the middle of my pancreas, and I was referred to a specialist who biopsied the tumor. The pathology examination found the tumor to be a benign solid pseudopapillary neoplasm, but because there were some neoplastic cells contained in the mass, it was recommended that I get a CT scan every year for the next 5 years.
By the following year, the pain in my left side was back, my pancreatic enzymes were elevated, and I was diabetic. Although an MRI showed a regional lymph node near my pancreas, my doctor said it was so small it was nothing to worry about and to come back in a year for another MRI. Now I realize that the lymph node should have been a red flag that the tumor was recurring. In 2010, the mass was in my liver, and that’s when I finally got a diagnosis of nonfunctional pancreatic neuroendocrine tumor.
Lessons Learned
The medical missteps didn’t end there. The oncologist I was initially referred to had never treated a patient with my type of cancer, so she recommended that I see a specialist in pancreatic neuroendocrine cancer who was located out of state, and she agreed to treat me based on his protocol. I later learned that when a patient has a rare cancer like mine, she should be treated solely by an expert in that cancer type.
Because the number of tumors in my liver made me ineligible for immediate surgery, my oncologist prescribed sunitinib (Sutent), a drug that had shown positive results in clinical trials for shrinking my type of cancer but that was not yet FDA-approved for pancreatic neuroendocrine tumor. While I was on the drug, my local oncologist prescribed an antibiotic for a sinus infection (amoxicillin, and then azithromycin when the infection persisted). I experienced an adverse drug interaction that nearly caused liver failure. The antibiotics were stopped and I improved.
The good news was that after 8 months on sunitinib, the tumors had shrunk enough for me to have the surgery. During the procedure, the lymph node was excised and examined, but it turned out not to be cancerous. However, the right lobe of my liver had to be removed because it was riddled with cancerous tumors and several small tumors were removed from the left lobe. Although the surrounding tissue margins of the tumors were clean, the cancer has since recurred on the left lobe of my liver, and I’m back on sunitinib.
Missed Opportunities
I now know that I’ll never be rid of this cancer. My oncologist reassures me that while my disease is not curable, it is manageable, and I see him every 6 weeks so he can monitor my status. Having cancer has interrupted my life and leaves me exhausted from the treatment and running from one specialist to another and from one test to another. However, my family and my faith keep me positive and hopeful. With six children, four of whom still live at home, I’m often too busy to even remember that I have cancer.
Nevertheless, when I look back over the past 2 decades, I can’t help but think that if only someone had prescribed a CT or MRI scan of my abdominal area when I first began experiencing gastrointestinal pain, the cancer might have been detected at a much earlier stage, when it was potentially curable. I realize that the symptoms associated with neuroendocrine cancer can be elusive, fitting a variety of less serious diseases and making a definitive diagnosis especially difficult. Still, I wonder, if my doctors had been more vigilant—or if I had been more proactive earlier on— might the outcome have been different? ■
Debi Rutkowski lives in Royersford, Pennsylvania.
