Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

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

EM | @elm60 | Oct 18, 2022

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!

Colleen Young, Connect Director | @colleenyoung | Oct 17, 2022

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?