susie54's Journey:

Became ill with what I thought was gastroenteritis and found incidentally through CT scan that I had tumor in liver size of golf ball. Had 2 ultrasounds, MRI and finally liver biopsy and was diagnosed with Neuroendocrine tumor of the Liver. As of now it appears that the Liver is actually the primary site. No other cancer cells found via additional Octreocide Scan and other CT scans. Feel confused. Biopsy was miserable experience and much more painful than any information I was given. Pathology report is a mystery to me. Report is not calling tumor a carcinoid or malignant..however I have been told it is not benign. Feel fustrated and exhausted. Have now been hospitalized 3 times due to symptoms.

Had what was to be a "core" liver biopsy. Was told I might experience mild pain for 30 minutes post procedure and that I would be given sedation during procedure to minimize pain. Biopsy lasted 40 minutes with repeat samples. I didn't feel sedated at all and the biopsies taken were excruciating. Post the procedure I was in complete distress and on pain scale of 10 out of 10. I was not given anything other than an "alleve" to address the pain which was unbearable for remainder of day. I was put in a room where all the doors closed so none of other patients in recovery room could hear me scream. I ended up going to a different hospital next day...where I was admitted and given morphine. Was also diagnosed next day with diverticulitis directly under biopsy site. Don't know if this was related. I believe it was because I have never had diverticulitis before. Also experienced excruciating referred pain from liver in right shoulder and down right arm for 3 days post the procedure.

Began Octreotide injections that I have learned to give to myself. I get a wave of heat that starts at my head and goes down to my chest and lasts about a minute. This medication is supposed to control diarhea and also may stop tumor from growing further. I never thought I would be able to give myself these injections...but I am soon learning that I will do what I need to do. Trying to still wrap my head around the diagnosis

After a year of not knowing where primary was, I had the tissue from tumor in liver sent to Bio Theranostics lab for molecular/genetic testing and the result came back identifying the primary site as pancreatic ISLET cell neuroendocrine. I am thankful to Dr Woltering for suggesting this test to me to help figure out where the primary is so that I can try to do something about it before it goes back to liver.

Back in 2015 NIH picked up metastasis to peripancreatic lymph node on gallium68 Scan. Subsequent investigation with multiple specialists pointed to further watch and wait. Health was relatively stable until past 2 months. Symptoms have dramatically increased as well as new symptom of highly elevated blood pressure. GA68 past November showed marked SUV uptake in that lymph node but it had remained stable in size until recent MRI has detected doubling in size requiring a new treatment decision. My current NET specialist is Dr. Wolin at Mt.Sinai. He will present findings to tumor board next week and I will need to decide whether to proceed with surgical intervention or Everolimus. I am holding off on PRRT for now because the liver has continued to remain stable.