New pNET so scared

In 2019 a 6mm PNET was found on the head of my pancreas. In October of 2019 I had surgery (best known as a Whipple). Here it is 2025 and I get screened every 6 months. My understanding Neuroendocrine tumors are slow growing. The best advice I can provide is find a surgeon and oncologist that is proficient in PNETS. Stay strong. It’s a long journey

Thank you for sharing your journey and the encouragement. I hope you are disease free now. I live in Toronto and the wait time for specialist is long. Mine was booked in 2 month. And I don’t know how long I need to wait for the surgery. How fast did you get the surgery done and did the tumor grow during waiting?

Hello @awu99 and welcome to Mayo Connect. I see that you are early in your diagnosis with pNET. Was your pNet diagnosed through a scan or biopsy? I know that waiting to see a specialist is a difficult wait and we would want it to be sooner. Do you have an appointment scheduled with the surgeon?

Share, as you are comfortable, how you are feeling and what symptoms led to this diagnosis.

I believe Canadian medical care is different from American My tumor was found in July, meet my surgeon in August (had additional tests until surgery) . Grade 1 stage 2. I only needed surgery —no chemo or radiation.
Strength being sent your way. Hopefully before you know it, it will be over

I'm so sorry you have to go through this and understand your fear. The waiting is always the worst part.
Most nets are slow growing so there isn't always a sense if urgency from the medical field (though there always is in our brain)
Have you had a biopsy? The ki67 score will give you an idea of how aggressive it is.
When you say the ga68 was negative, did the known pnet light up?. If so, and nothing else lit up, I would consider that encouraging. Have you had a pelvic mri?

For some context for you, my husband was diagnosed with a 10 cm pnet on the tail of his pancreas and more than half his liver covered in tumors. 18 years later and many surgeries and treatments, he's still here and living life. As I said, this is typically a slow growing cancer. Our original net specialist discussed it in terms of a chronic disease and he was right. Its a lifelong game of whack-a-mole, but there is more options and hope now more than ever.
I pray for peace in your heart and an excellent outcome to your surgery.

Did they tell you what grade it is? 1, 2 or 3? Depending on where you’re located (state or country) the surgeon may follow the national (or international) guidelines and look at the size & grade, to determine if they will remove it or recommend surveillance.

Yours is .8 cm, which is smaller than mine which is 1.2 cm. I’ve been to 6 surgeons, and the consensus is surveillance with scans. Since I was waiting to get another procedure, I have just had that done on September 8 and now we will go back on November 19 and check again. I’ve had (2) CT scans, 1 PET scan, 1 biopsy, and lots of bloodwork plus genetic testing.

My tumor is on the middle top, and grade 1. I’m on the wait and watch surveillance list, and I still want it removed. Before I do, I’ve decided to see if I have the MEN1, NF1 or VHL gene before going doing so. You can ask your oncologist if you’re interested to see if he can refer you to genetic counseling. I had that appointment which was about 60 minutes. They explained everything. And then took two vials of blood and off the testing went. The turnaround time for that is three weeks. I’m still waiting for a results.

Hope this helps!

I only had one MRI and one Ga68 PET scan so far. Waiting for the specialist…

Thank you for sharing. Our Canadian medical system is famous for its slowness. I need to wait for two more months to see a specialist. And I wasn’t given any other tests like blood test for cancer markers.

Thank you for sharing your experience. I hope mine is similar and can be observed for a bit. However I will be in the dark for these two month not knowing the grade or type, can wait or not. So I’m really anxious and wonder what I should do.
Did you see 6 surgeons through 2nd opinion?

I boy had one opinion. I trusted my surgeon completely. He was extremely informative and drew a diagram of where the tumor was and then drew another diagram of what The Whipple surgery entailed. He put me completely at ease. I sincerely that you can also trust the doctors that you are able to see. I wish you all the best and reach out to NET organizations. They are extremely informative in what you can expect going thru this journey. Prayers to you and your family