Just diagnosed with pancreatic NET stage 1

Welcome @kt348. Finding out that you have cancer sends one into a tailspin. It's so hard to make decisions about when and what to do when the answers are clear cut. I can only imagine your fear and devastation.

To help you connect with others, like @sturns @elm60 @dbmenger @musicflowers4u @kaforester3, who also have pancreatice neuroendocrine tumors, I added your discussion to the Neuroendocrine Tumors group as well as the Pancreatic Cancer group.

It sounds like the tumor was found incidentally while getting a CT scan for something else. This helped your team find it early while it is still stage 1. That's good. Given that it is 1cm in size, well sectioned, slow growing, it sounds like you made a good decision with all the information available to you.

Are you being seen by a NETs specialist? Would you feel more comfortable with your decision if you got a second opinion?

Pavlina60: I sympathize with your insomnia… been there! My immediate solution is OTC Spring Valley extra strength 10mg adult Melatonin sleep support GUMMY!!! It is not logical but I chew 2 and sleep in 1/2 hr!
I hope you try it my friend. Only the best for you!

Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen, gallbladder and part of my stomach. On Lanreotide since March. One CT scan 3 mo later showed no new growth. Next on is on Sept.19. Fingers crossed Lan still works. I have some side effects like insomnia and hairloss, but other tha that still functioning well on a daily basis🦓💜

Hi @mmerry

If you read through the posts in the NETs group, you will see that many of the members are also on the "wait and watch" approach. It seems to be a common approach. Most patients who are following this protocol feels like you do, they want answers, a biopsy or just something to make sure they know what is going on. I am glad to hear that you are with a good cancer center in Toronto.

I'd love to hear from you again. Will you continue to post updates and questions as you continue on this NETs journey?

I would like to thank you so much for this reply and the link for the NET specialists. I was diagnosed with a 1.7 cm PNET in the tail of my pancreas in January 2023 incidentally and it appears to be non functioning. I am in Canada and went to the one of best cancer hospitals in Toronto, Canada. They have run many tests and scans including PET scan and CT's but in 8 months I have yet to speak to one doctor. Not one. So I have no one to ask questions of such as "Shouldn't we do a biopsy or is it to risky to biopsy when the NET is in the tail" .
They have put me on the 6 month watch and wait scan approach which I am grateful for but sure would like to have a doc to ask basic questions of. So thanks for this list as I will make my way to one of the Canadian docs on this list.

Hello @bellom

When you say, "I’m learning that I have yet so much to learn about this" you are expressing what most of us feel after a NET diagnosis. This diagnosis puts us all in a place of learning and connecting with others. I'm so glad that you found this forum. This is a great place to learn from the experience of others.

Some of your questions can only be answered by your medical team. Regarding finding a good surgeon in your area, I would highly recommend that you be willing to find a NET specialist, whether or not that specialist is local. Be open to considering a virtual appointment if you cannot find a NET specialist conveniently located nearby.

Mayo Clinic has three locations and there are NET specialists at each facility. If you are interested in a consultation, here is information for obtaining an appointment, http://mayocl.in/1mtmR63.

If an appointment at Mayo is not an option for you, here are names of NET specialists world-wide with the U.S. doctors listed by state,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Finding a NET specialist, rather than a general oncologist, is very important. NETs are a rare form of cancer, and they don't behave like typical cancers. Therefore, in order to get the best treatment, you need to have at least one consultation with a specialist. Often that specialist is willing to provide good direction for your team that is closer to home.

I am a 20-year survivor of NETs, having had my first surgery in 2003 and the last surgery in 2016. I know from experience how important a specialist can be.

What are greatest concerns right now? Are you maintaing your weight?

Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen, gallbladder and part of my stomach. On Lanreotide since March. One CT scan 3 mo later showed no new growth. Next on is on Sept.19. Fingers crossed Lan still works. I have some side effects like insomnia and hairloss, but other tha that still functioning well on a daily basis🦓💜

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET diagnosis is different. I’ve been told by drs that although my liver has many areas of concern that my liver blood tests show “normal” liver function and since our livers are quite large that enough of my liver is ok for me to function well. I hope this relieves your mind from “doom and gloom” thoughts. Be your best!

Did you have to get a PET scan before your surgery?

I had a very similar diagnosis in 2019, pnet incidentally found on a ct scan that was ordered for colon issues. I had a distal pancreatectomy in February of 2020. Tumor was well defined, 2.5 cm, nonfunctioning ki 67 >2 . Surrounding lymph nodes were clear. Surgeon managed to save my spleen. I have scans every 6 months but no recurrence of tumor. I have had no other treatments than the ct scans.
I know it’s terribly frightening at first but it gets better. Post surgery I’m feeling well. I have gastro issues frequently, but I mostly feel very lucky that the first scan was ordered and the tumor was found early.