NET tumor of pancreas (1 cm) diagnosed

Hello, thank you very much. Don't worry, everything will be fine, stay positive. I wish you the best of luck, and if you'd like, please comment on your progress here.

I am not a specialist, nor a doctor, as I told you, my wife has had this rare disease, I do not recommend anything, but I do suggest you seek a second opinion, a grade 1 NET is slow growing, you can wait a while for a second opinion, but I think that if the possibility of being able to remove it arises, I think it would be the best decision.

My English is fine, thanks to Google Translate. Hahaha

Hello, dear, thank you very much. That's right, Cushing's syndrome is terrible. Fortunately, he's recovering normally. He has some after-effects, like muscle pain, but it's tolerable. And as I said above, my English is thanks to Google Translate. I send you a big hug.

This sounds very similar to what I need to do so keep us posted. I have a 7mm grade 1 in the head of the pancreas ( I live in STL). Im going to see a NET specialist at WashU end of the month.

Please keep me posted. I live in Springfield IL so St Louis would be the closest for me and it would be helpful to have a NET specialist name if you would recommend.

I'm thinking of getting a 2nd opinion from Mayo, but if there are NET specialists in STL that would work better for me.

My story is/was similar to yours (and I'm a similar age!). Picked up a small pancreatic tumour on a CT scan, but was told I had to wait until it reached 20mm before being removed ('international standard'). Tried a biopsy in the early stages but not enough cells could be harvested to provide a conclusive result. After five years of 6 monthly scans, the tumour did reach 20mm and it was removed. 12 months later, a follow up scan shows that tumours have metastasized and I'm now on regular Lanreotide. One will never know whether removing the original tumour earlier would have stopped the metastases.

I had a somewhat similar situation when I was diagnosed with my pancreatic neuroendocrine tumor. In October of 2024, I was sent to the hospital due to bilateral pulmonary embolisms, a pulmonary infarction, and numerous blood clots in both legs and both lungs. My hematologist sent me to Mayo, where they did an endoscopy to try and find what might be causing so many blood clots. After the endoscopy, the doctor doing the procedure came into my room and said everything looked good except they found a small tumor on my pancreas. He assumed it was neuroendocrine and told me there was nothing to worry about because they are very rarely cancerous on the pancreas. I, too, was one of the "lucky" 2% where it was malignant. The pancreatic doctor at Mayo and my hematologist both were quite surprised but assured me it was small and NET's are generally slow growing. I was monitored for two months following the endoscopy by using the CA 19-9 blood test. When that went down to the "safe" range, the monitoring was done. I also asked about removing the tumor but the answer from both doctors was no. The tumor is on the tail of my pancreas and they said removing it would be worse than just routine monitoring. I am headed to Rochester the end of this month for a six-month check using endoscopy and also a CT scan of my abdomen (due to bloating). My brother died from pancreatic cancer 5 years ago and the memory of his suffering lives in my mind. I understand your fear in not knowing what the tumor might be doing and worrying about the growth rate taking a sudden increase. Unfortunately, in my case at least, that is all that's being done. I feel like I am sitting on a powder keg just waiting for it to blast off and no one is doing anything about it. So frustrating but there only so much, we as the patient can push. My doctor at Rochester works only with pancreatic cancer and particularly with PNET, so I don't think there would be any reason to try find a different doctor. I truly hope you can get your issues resolved, this is no fun! (BTW, I am also 73.) Good luck in your journey!

Thank you so much for sharing. It is comforting to me that your Drs at Mayo are saying the same thing as my Dr did here; to wait and watch. My tumor is in the head. I will have my biopsy this Wednesday and am nervous about it. After that I will try for a second opinion. I'm not sure how to do that, but I'll figure it out. My Dr said to wait a year and then have another CT scan. He didn't mention anything about doing any more lab work. My CA 19-9, which was done before I saw the surgeon, was normal (18). I am a detailed oriented and nervous type; I always need a plan. This will be on my mind for the next year if I have to wait that long for the tumor to be monitored again. I think I will ask if they will do another CT in 6 mos. vs a year. I just feel like there wasn't that much concern for urgency on this from the Drs and this isn't a big deal to anyone but me!

I totally agree with you on the seemingly lack of concern or urgency. It would be nice to have an option of how long of time between the monitoring of the tumor. One year seems like a long time to wait and it certainly doesn't give a person much peace of mind not knowing. I've always heard if you find the cancer in the early stages, before it spreads, your outlook is much better than if it isn't found until it is larger or spreading. That is why the, "wait and see" approach is so frightening, especially dealing with the pancreas. Also the fact that PNET is so rare: 2% is a pretty low margin of people with this particular cancer. It makes one question why the doctors feel comfortable with letting it just sit with no medical intervention. There are likely few comparable studies, given that only 2% of pancreatic cancers are neuroendocrine. I guess we have to be our own advocates and possibly become a pain in their side to get the reassurance and testing that gives us some peace of mind. The very best to you on your journey. It's good to know other's feel apprehensive when given the "wait" technique.

Hi there. Sounds similar to me. 1.6cm at most, grade 1. Tho mine was squishing closed the pancreatic duct and that atrophied away 1/2 my pancreas. First opinion too was watch it. 2nd was have it removed. 3rd was remove as well. Maybe getting another opinion might be an idea too for you?. Gives you more information. Better to know than maybe worry needlessly. When mine was removed and alas surprise it had spread to one lymph node. So now recovered from surgery and waiting on appt for possible next steps. Otherwise surgeon says he’ll see me every 6 months for 5 years. I’m 64. Glad I did it All the best. Everyone is different!