So, now just still waiting, losing my mind being worried and new quest

If anyone has new thoughts Im all ears

I'm so sorry you're so unwell. I know many people have struggled with symptoms prior to being diagnosed.
My husband's tumors are non functional so he doesn't have any syndrome, so I'm afraid I can't help with anything related to that. But I do know that most people with carcinoid syndrome do see evidence of that in the 24 hour urine test, so the fact that yours was negative would seem to be good news.
There is a net specific pet scan, gallium 68, that covers the entire body. If there are any net tumors with SSTR receptors, that scan will pick them up. While some nets don't have receptors so they don't light up, the majority do have the receptors making this pet scan a particularly helpful tool.
I understand your stress and anxiety while looking for an answer. It's difficult to address any what if questions without a diagnosis, however. In the meantime, I would suggest that you focus on what you can control to improve your overall health. Good underlying health is so important to he able to help your body fight any disease. Try to focus on improving your basic health by eating right, exercising and minimize alcohol intake. Maybe also seek out a counselor to help you deal with the stress that you are under since stress does have a big impact on your health.
I pray that you find an answer amd start feeling better soon!

A friend had the itching you describe for 2 years and had been seen by several specialists with no answers other than a histamine reaction before it was discovered his bile duct was clogged after becoming jaundiced and having discolored stools. In the past 1.5 years, he has had 3 surgeries to put in or change out stents in his bile duct. After the first stent, the itching was immediately gone, and BM returned to mostly normal. During the last surgery, the surgeon noticed his pancreas was inflamed and biopsied it. The results were positive for the presence of a tumor. It was caught early and is treatable with Chemo and surgery. I hope this doesn't cause you any more anxiety. I'm just hoping it may help in your search for answers.

@lindabees Thank you very much, I'm trying so hard to get a scan but everything takes for ever, I will take your advice on getting back healthy otherwise. Also I am trying to find a new therapist, so sad mine passed away, he was great, and also had major hook ups in the medical field.

@lanierj1 Thanks for the info, can you find out if he had abnormal bilirubin readings, mine are good and I think normally that is high if bile ducts and such are messed up, last I looked. Also a couple docs talked about that with me but who knows anymore.

@jsudjian He said the doctor also suspected the rash was due to arthritis, but his labs were all normal the year before he turned Juandiced. It was then that the bilirubin and Lipase labs revealed a problem. He was living with the itching and frustration after nothing was helping. He tried all the anti-itching and arthritis meds with minimal relief. I am sorry you are going through the unknown right now. Hang in there with clean eating, exercise, and advocating for your health. I am praying for you. My husband also has PNET, which is only under surveillance(caught early), but he suffers from different symptoms that are always dismissed by his doctors, and that takes a mental toll that only makes things worse. You're right! Who knows anymore?

@lanierj1

I dont have rashes really, its just constant itchy skin and face flush and heat, idk

If your husband has one, why are they not removing it, or them?

They would rather wait till it opens up and creates syptoms?

Also if he has other symptoms, how do they know theres not one somewhere else?

@jsudjian I hope you find answers quickly for your symptoms. The itching and loss of sleep are torture.
We have gotten 2 opinions, and both Surgeons/Oncologists say leave it alone until it is 2cm or if it becomes "active", since the Whipple surgery is high-risk and life-changing.
At 2 cm, it has a higher chance of spreading.
He has an MRI or CT scan every 6 months and a PET scan yearly.
Over 2 years, it has grown from 1.1 to 1.6 cm. We are thankful for the slow growth, but he does suffer from intermittent stomach/back pain, fatigue, and bloating that they say are not related.

@lanierj1

So the one they are watchong is in pancreas, but not in an easy spot to pull it?

Other ppl have them pulled from pancreas though with whipple right, is his just in a harded to reach spot or something?

Im not familiar with the surgery

My doctor told me to never drink any alcohol I had surgery 18 years ago had several tumors in liver had 4 left after surgery now I have 9 he wants me to have a prrt radiation in a few months.