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

Posted by jsudjian @jsudjian, 2 days ago

I had CT scan in 23 looking for tumors for testosterone issues, found nothing, but now here I am fifth the full time facial neck and head flushing and itching, slightly elevated heart rate now and then but I'm extremely stressed and out of shape too so idk.

I know PET CT is main test.

I do the urine test monday or tuesday.

I'm just praying it's not NET, but we've ruled a lot out, scared and can't stop thinking about it.

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

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.

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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.

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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!

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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.

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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.

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