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Just diagnosed with PNET: Any thoughts on watch & wait approach?

Posted by vtn @vtn, May 11, 2023

I am 64 and my PNET was discovered after an EUS because my gastroenterologist could not find a solution to my chronic diarrhea. I had urine and blood tests. Urine came back negative and VIP, plasma blood results are in the process of being evaluated (genetic panel test). I saw a NET specialist surgical oncologist at UAB. I had a CT before seeing him and he informed me that the PNET did not show up on the scan but there were nodules in my thyroid. I had an ultrasound and calcitonin test and calcium level came back as 9 which I was told is in the upper end of the normal range. So thyroid surgery unnecessary.
The PNET was 5mm x 6mm on the head of the pancreas. The biopsy results concluded that the tumor is benign - well differentiated and Ki-67 < 1%. I will have a Ga PET Dotatate but I am waiting for the results of the VIP level and somatastatin test. The gastrin test was normal. I do not have a problem with insulin. I think this might be a nonfunctioning PNET. The PNET doctor wants to watch and wait. He ruled out surgery because of the dangers of a Whipple. He is a surgical oncologist.
Does anyone have any thoughts on wait and watch approach? In some countries, surgery is recommended no matter what the size of the tumor. I fear if I wait and need this surgery at a later date I will be too old to tolerate it. I am healthy now. Has anyone have any thoughts on the wait and watch approach?

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

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ntrlred | @ntrlred | Jul 14 1:46pm

I was diagnosed with a 14 CM PNET (the size of a volleyball they said) and had my tumor resected along with the tail and body of my pancreas, my spleen, 21+ lymph nodes, an adrenal gland and part of my omentum. My oncology team said that it had been growing at least for 2 years. I was diagnosed as a Stage 3 grade 2. I am one year out from surgery and still no evidence of disease. My point in this for you is that PNETs can grow for a LONG time and never be a problem. My only symptoms were back pain and towards the very end before diagnosis issues with eating and going to the bathroom. Watch and wait is very common and totally ok if you aren't having any further issues. Regular monitoring is the key!

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 14 3:17pm
In reply to @lanamarie "Thank you for your encouragement. It certainly helps to have people who are familiar with pNET..." + (show)
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Thank you for your encouragement. It certainly helps to have people who are familiar with pNET and can offer expertise on how best to move forward. I've been trying not to be too concerned but sometimes my mind doesn't cooperate with what I would like it to do. (You'd think I'd have better control...but nope! It's pretty good when you surprise yourself. :-)) Due to the posts I have been reading here, I am even more convinced that I have to be my own advocate. I needed that bit of a push to encourage me to keep on top of things. Thank you!

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Hello @lanamarie,

I was noticing that it has been a few months since you last posted. As I recall, you were thinking about getting a second opinion. I hope you are doing well.

I look forward to hearing from you with an update. Were you able to get an appointment at Mayo Clinic for a second opinion?

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