Has anyone had NET show up on CT scan, I had CT scan in 23

Yes, sometimes NETs are found with CT scans but it takes more than that to confirm it. I think seeing it under a microscope is the definitive answer. There is a lot more to it than that of course. If you were to end up with a NETs diagnosis, it's not the end of the world. Some people live a long time with it. Also, learn to not worry about things you have no control over. Be positive and decide to do the best with whatever hand you are dealt. Good luck to you.

I understand your fears. I hope you get to the bottom of what's causing your symptoms.
My husband's pnet was found incidentally through a CT scan. But it took a biopsy to confirm it was net and not adenocarcinoma (Praise God!) It also showed spots on his liver which the radiologist misread as hemangiomas when they were actually mets. So yes - a net tumor can be visualized with a cut but others have said, additional testing is required to confirm.
BTW - my husband's diagnosis was 18 years ago and he's still living life.

I had an MRI in 2020 to look at my kidneys for kidney stones and they discovered a tumor on my pancreas which was then biopsyed and positive for a NET. It was discovered early and I was luckily a good candidate for a pancreatectomy which was donein early 2021. My surgeon removed all of my pancreas except the head and also my spleen due to shared blood vessels. I still received insulin and digestive enzymes from the head and there was no metastasis. I've been clear on every yearly CT scan including my recent one a couple of weeks ago. I was very lucky with the early diagnosis and surgery. I don't take life for granted anymore!

They found a number of NET's on a standard CT scan done in March 2025 based on some side pain I was experiencing. Of course actual confirmation took a PET scan and biopsy, etc. but the small intestine, lymph nodes, and liver were the sites that were confirmed. All removed in May 2025 and I'll have my first follow up in December. Keep the faith and live each day to your best ability.

Hello. I wanted to add some information about the testosterone issues you mentioned. My husband was diagnosed last year with grade 4, stage 1 NET with primary in small bowel and liver metastasis. He is currently stable and doing well with monthly Lanreotide injections. Prior to his diagnosis, for more than a year, he was having hot flushes, which we originally thought was something to do with the testosterone. That actually started his diagnoistic journey and at that time he had high total testosterone, low free testosterone and high SHBG (a protein made in the liver which binds testosterone). The actual diagnosis was made after a liver biopsy and PET Dotate scan.
I would urge you to follow up with a NET specialist.
I also wanted to add that you will find many on this forum who have lived with NETS for years (and decades) with good quality of life! I know the diagnosis part is terribly scary, but if you get your diagnosis confirmed, you can make a proactive move toward getting treatment.

Hi...Yes. my PET scan was negative, and after 3 yrs, a CT enterography found it..
Good luck to you

I had a ct scan in 2018 after a motorcycle accident
At that time they found 4-5 nodules between both lungs
Watch them until 2023 where we did ct which showed growth
Saw pulmonologist biopsy next diagnosed 8/3/2023 started treatment 1/2024
Just had a ga-68 pet scan
I meet with oncologist on Monday
Take care and God Bless

Hello @oilyproudnana and welcome.

It looks like your biopsy confirmed lung NETs. Is that correct?

I see that the first indication of lung nodules was in 2018. Have you been having symptoms such as shortness of breath or cough? I want to invite @californiazebra to this discussion as she has had lung NETs and DIPNECH for many years.

When you visit the oncologist on Monday, I recommend that you bring a list of questions and take notes on what is discussed (or bring a family member with you to the appointment). Here is an article about Keys to a Successful Doctor's Appointment.
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
Please post any questions you may have. We have many members in this group with lung NETs, and they would be happy to share their experiences with you.

I look forward to hearing from you again. Will you continue to post with your questions or concerns?

Thank you for your response
Yes confirmed NET in 2023
Found nodules in 2018 and we opted to just monitor once a year
Can I post a copy of my recent Pet scan
There are at least two other spots that if I’m reading the results right they did not light up on scan
I was not initially having symptoms until late 2022
And now I’m short of breath constantly no matter what I do…
I’m grateful I found this support

Oh wow. So similar!!! I’ve just had the surgery this past April. Tumour, half pancreas and some lymph nodes taken. One lymph node had a small bit in it but no recommended treatment after. Tho trying the Creon now and not so sure I need it. Been fine since surgery but just had diarrhea that the Creon seems to solve and yet I don’t use it consistently. Thinking it was just a one off? Trying to see if I really need it. My first CT/follow up is Sept 29. I am so happy to hear your story 5 years out. They said they’d follow me for 5 years. Thank you so much for your post. So encouraging to read. Appreciate it!!