Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage, on July 1, 2022 I had the removal of a neuroendocrine tumor in the small bowel and one of the five nearby lymph nodes removed was found to be malignant. An Aug. 2 a Chromogranin A blood test was 102 ng/mL somewhat above the standard range. For a week after I was home from the surgery I had significant night sweats.
I had a PET scan with dotatate (Cu-64) on August 23, 2022. The radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.” An Aug. 25th Chromogranin A blood test was 81 ng/mL well within standard range. My oncologist offered to begin Octreotide injections. I decided to wait and to get a second opinion.

I chose to go to Dana-Farber Cancer Institute in Boston and a team there examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of NET cancer. Combined with my current lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should have nothing to be concerned about.

A November 22, 2022 repeat PET scan with dotatate (Cu-64) was “similar to the prior exam, stable.” Both Drs. are very optimistic and I will have a follow up CT scan in six months. I feel fortunate and strongly recommend second opinions.