Pancreastatin level at 1500

Posted by Phxsuns @cfuller84, May 1, 2021

Hi,
I have had 2 pancreastatin test 1st at 1,000 2nd at 1500 . My gallidium pet showed diffuse uptake in the pancreas but thought it probably not cancer otherwise normal. I am having chronic severe abdominal pain and fatigue. I feel like my scan missed the tumor due to my symptoms and the high pancreastatin. The GI said they cant do anything other than pain meds because nothing showed up on the scan. Has anyone else had this happen? Any suggestions?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

My husband’s journey started In 2015 with stomach pains nothing diagnosed. Then in 2019 he was in hospital for black Tary stool which means blood in stool. He had endoscopy and colonoscopy nothing found. No CT done. In January 2022 he had terrible lower abdomen pain. The ER doctor ordered a CT and a carcinoid Neuroendocrine tumor was found in his small bowel GI tract. Local doctors looked at the CT and said the tumor was only in the small intestines. So we were told it was no where else. He went to the cancer Doctors they looked at the same CT scan and they could see that the Cancer was in the Liver, lymph nodes. The cancer doctor stated that Neuroendocrine is rare and it takes a trained eye to see on a scan. Doctor said my husband had this cancer for a very long time. If we would have caught it sooner surgery to remove the Tumor would have been 100% cure and no other treatments needed. He had a successful surgery and removed tumor from small bowel and 5 ft of intestines. They also removed 22 spots from liver and lymph nodes. Unfortunately the cancer had spread before diagnosed and it was out of the region. It was at stage 4. He started on Octreotide injections which kept his cancer Stable for 10 months. In January 2023 CT scan found 6 spots on liver he then was put on Lanreotide injections. In July 2023 the CT scan showed too many spots to count. In September 2023 he started PRRT treatment he had 4 cycles with his last cycle completed March 2024. He had his first Pet CT scan after his final PRRT cycle. It is hard to determine if the PRRT worked since it might take a year or 2 years to be effective. The CT looks like the cancer is stable. He has a high tumor burden on his liver. But he has a PANCREASTATIN SERUM LEVEL of 5054. He does not have any tumors on his pancreas. His pancreas is normal on CT. PANCREASTATIN Levels are effected from Neuroendocrine tumors that metastasis to Liver. My husband is scheduled for a MRI of the liver to get a closer look of his liver. If we could go back we wish we would have asked for a CT scan in 2015 or 2019 our life would be so much different now! but we can’t go back. His cancer is not curable he will be trying different treatments. My opinion to you is advocate for yourself tell the doctors to consult with a Neuroendocrine specialist to make sure you don’t have this kind of cancer. Best of luck to you I just realized that this was posted in back in 2021. I am new to this but has anyone else have this PRRT with high Pancreastatin level 5054

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