An Unexpected Diagnosis of PNET

Lisa Tayman

• Shoulder pain leads to pancreatic neuroendocrine tumor diagnosis
• My doctor recommends a hospital that specializes in pancreatic cancer
• Whipple procedure
• Working on my bucket list

It was 2019. I was 44 years old and had been married for 16 years with four beautiful children.

I had been working as an ER nurse for 19 years and was working part-time as a nurse practitioner. I tried to eat healthy and get plenty of exercise. My friend and I went to the gym together three days a week, something we had been doing for seven or eight years. I also ran an additional 10-15 miles per week.

In February I began to have intermittent pain to my right scapular area. Since I had been an ER nurse for nearly two decades at that point, I considered the possibility of gall bladder disease. I figured if the pain became worse, I would go to my doctor. Over the next few weeks, the pain increased in frequency and intensity, so I went to see my primary care provider.

She ordered blood work and an abdominal ultrasound. She believed it was gall bladder disease also. However, my labs came back stone-cold normal, but she had already ordered the ultrasound, so I went and had the imaging done.

On March 29, 2019, I went to an outpatient diagnostic center and had the ultrasound performed. The tech that performed my ultrasound said she wanted the radiologist to look at my scan before I left. It was a Friday—I really thought she had seen gallstones on my scan, so she was going to have the radiologist come in and tell me, rather than have me wait until Monday.

However, when he came in, he said he had seen an abnormality on my pancreas, and he wanted a CT scan performed—right then. They were already on the phone with my primary care doctor and my insurance carrier. I was still in denial at that point. As an ER nurse, many times I had seen a child have an abdominal ultrasound to rule out appendicitis and not get a clear picture, so a CT scan ultimately needed to be ordered.

I was given the oral contrast to drink, and I waited. My husband texted me to ask how my ultrasound had gone. I told him that the radiologist wanted to do a CT, so he drove over to come sit with me since I was going to be at my appointment a lot longer than I originally anticipated.

I was relieved my husband was there because following my CT scan, the tech asked if I would stay in the waiting room and the radiologist would be out to speak with me. When we were called back, my husband and I walked down a very long hallway to a darkened room that had images on display. That’s when the radiologist told us I had an 8 cm mass on my pancreas. He asked if I knew a surgeon, otherwise he could recommend one for me. I assured him I had someone in mind.

Learning More About the Tumor

Because of my 19-year tenure at the same hospital, I knew most of the surgeons that made calls to the ER. So I spoke with my primary care provider and told her I had someone in mind for my consultation.

I had my appointment with Dr. Un Chin on April 2, 2019, for surgical consultation. He wanted me to have a biopsy performed. Because we live in the small town of Salisbury, Maryland, the GI physician that performs biopsies was unavailable until April 26.

After the procedure I went for a follow-up with Dr. Chin on April 30th. That’s when he delivered the devastating news that I had denied for so long. I had a pancreatic neuroendocrine tumor (PNET). He also said that he performed about 20 Whipples a year, but he really wanted me to go to Johns Hopkins Hospital (two hours away in Baltimore, Maryland) for evaluation and eventual treatment since my tumor was so large and potentially complicated.

My appointment with Dr. Jin He at JHH was on May 22nd. He scheduled me for a specialized CT that morning, prior to my consultation with him. Dr. He was pleased with the results of the scan, which indicated that the tumor had not wrapped around any arteries or veins. He also reported the size of the tumor indicated to him that I would most likely have another tumor in the future, but in another area.

On June 3rd I went for a DOTATATE scan and pre-operative bloodwork, EKG, and physical. Only the tumor on the pancreas was identified. No further radiotracer-avid foci suggested lymphadenopathy or metastatic disease, which was reassuring.

Finally, Surgery

On June 21st, I had a Whipple procedure. It was an eight-hour surgery! Dr. He was able to perform robotic surgery, so it was actually minimally invasive. It was the largest tumor on the head of the pancreas ever removed using this approach.

The pathology report results read:” Well-differentiated pancreatic neuroendocrine tumor (8 cm), WHO grade 1, confined to the pancreas. Margins negative for tumor (closest is uncinate margin, 6 mm). Lymphovascular invasion seen. No perineural invasion. Twenty-three (23) lymph nodes negative for tumor. Gall bladder with autolysis. Pathologic tumor stage: pT3 pN0.”

I spent two days in the ICU and five more days on the regular floor.

On July 10th I went for my recheck appointment with Dr. He. He was confident that the tumor was completely removed and I would not need chemo or radiation. He also changed his mind regarding his initial impression. He said he did not feel another tumor would develop.

Clean Follow-Ups

My next follow-up was October 9th, again with Dr. He. The CT scan I had that day showed surgical changes but was otherwise unremarkable. Subsequent scans have been unremarkable.

I developed a chronic ileus after surgery and had periods of abdominal pain over the next year. I very rarely take Creon pancreatic enzymes anymore. I have found that eating a diet of seafood, fruits, and vegetables gives me the best GI health. I still have occasional mild abdominal pain, but it is relieved with a heating pad and laying down.

I stopped working in the ER in January 2020, and now work full-time as a nurse practitioner in pediatric primary care.

After my initial diagnosis in March 2019, I created a bucket list. One of the items on my bucket list was to write a novel. It was something I always wanted to do. Facing mortality and an uncertain future, I made the decision to write. I wrote several romance novels over the next two years. Under the pen name Greenleigh Adams I published my first book in April 2021 and my second in July 2021.