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?

Hi @kt348
I had a similar experience during a endoscopic ultrasound of a liver biopsy. My less than 1cm tumor 6 mm x 7 mm, ki 67 <3% stage 1, was found in my neck of the pancreas. I also had a history of GI issues all my life. I actually went in for a Whipple at the urging of my hepatologist, since everything goes fast with me..and the surgeon ended up doing a partial Pancreatectomy, but he was unable to see the tumor! I actually waited another 9 months and the tumor was picked up on a CAT scan and had grown. I waited another 7 months for better insurance and went to Mayo Clinic in Jacksonville for surgery and they also have a NET Specialist Oncologist as well! They actually found two tumors, one on the head and one on the remaining tail. I had a modified Whipple leaving the head of the pancreas, taking the remaining tail, spleen, gallbladder and part of the stomach, as the prior surgeon attaches the pancreas to my stomach wall! Both surgeries were very tough. I was 59 at my last surgery. I recently developed diabetes type 3c as a result of pancreatic insufficiency. Almost 3 years out in February, I am doing well. Be sure to check out other NET facebook groups as there are others out there facing your same situation! Please get a NET Specialist and opt for the watch and wait! All the best!

My thoughts are with you.

My husband has (had) a 2.7 tumor in the tail of his pancreas, found incidentally, that was just removed yesterday. He is doing well, and we are thrilled that it is gone. He retained 2/3 of his pancreas and his spleen was removed. I know full well the stress that this brings about. It’s been 4 months of full-on anxiety.

You mentioned having had a number of issues, I wonder if there are scans you can go back to get a growth pattern. He had had a CT to check and hernia repair one year before the tumor was found (tumor went unnoticed at that time). They referred back to it and found that it had not grown. This gave us the confidence to find a NET specialist, as we felt we had some time. Our local doctors did not take the time to do anything other than suggest surgery and we wanted to feel certain it was the best approach. We chose to drive 90 minutes to a university hospital and what a difference! Lots of tests later, he decided on surgery, feeling like he had explored it thoroughly. Time is a gift; use it to your advantage.

I know the watching and waiting would not have been the best option for my husband, as everyone handles that kind of thing in their own way.

All the best to you!

I have a 1cm PNET in the tail of my pancreas as well. I would strongly suggest that you see a pancreatic specialist. They will want you to do a gallium 68 PET scan, which will let you know for sure if it has spread anywhere else. Best wishes to you

I have been diagnosed with 16 cm PNET in December 2022.. Discovered accidentally during CT of my chest. Multiple CT, MRI and PET scans later, I am going for surgery on February 1st. Preparing for the worst and hoping for the best!🙏

So sorry! I have added you to my prayer list. 🙏

Hello everyone 6/28/22 I have been diagnosed with pancreatic cancer stage 4... My stomach kept burning in the insides, I kept throwing up, and was very very fatigued. Sweating so much in bed as if someone threw a bucket of water on me and my comforter.. 5 cm on my pancreas some spots in my stomach and 3 cm on my liver... And they told me surgery is not an option that I will have this for life.. now I have about $6,000 of medical bills & missing a lot of work through chemo. My wife decides to kick me out right before Christmas ran back to her old sugar daddy.. Now I'm a 38 year old truck driver who stays in his mother's basement. Because my life partner decide that I was no good anymore.... I wish I could redo the last 4 years over 🥲4sure.... I'm not sure what God has planned for me next but whatever it is.... Whatever it is I will be ready 💪🙌🙏 Thank you and God bless you all

Hello @jodaface02,

You have had quite a journey over the last several months. As I've read your previous posts, it sounds as if you are being seen at a good cancer center. Is that correct?

How is your appetite since you began treatment? Are you noticing a lessening of symptoms now?

Yes, Karmanos Cancer institute in Detroit Michigan. The doctor and staff there are wonderful. Did six session of chemo therapy ... Now I am at a 2-month break. And they are monitoring the behavior of my tumor... While letting my body recover from the chemo therapy... But with that in the supplements I take daily... I feel as if I don't have cancer at all.... I feel perfectly fine except for the back pains that come and go... But after my next appointment in March where are going to figure out what the next step for me is after the CT scan shows whatever results I may have.. keeping my fingers crossed