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

Posted by jsudjian @jsudjian, Aug 31 10:18am

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.

xosefa | @xosefa | Sep 13 2:40pm

I had a pet scan that showed 20 small nodules, 10 on each lung. Had a biopsia. NETS were confirmed. Grade 1. Only 1% rate of proliferation. This was 2 years ago. Oncologist say just to control and wait. No other treatment. Not too many symtoms except some dry cough and fatigue. I am now 82 years old. I guess there is nothing else I can do except to wait. Other recent scan do not show growth. I was thinking that I will probably die of something else at this age. Any comments?

rkklinger | @rkklinger | Sep 13 9:41pm

We've posted the story before just to reiterate: My husband has stage 4 NETS with tumors throughout body and skull. He was rediagnosed 12/30/23. Originally 1 tumor removed in 1995. He is on lanriotide every 28 days which has kept him stable. He often has a pain in his left side after eating. Dr. thinks it has to do with the food not breaking down. He takes 2 Gas X and has to lie down on his side. It usually lasts 15-20 minutes but last night lasted an hour. We keep track of what was eaten when it happens but no certain food is consistent. Does anyone have this happen and have you determined the cause?

jsudjian | @jsudjian | Sep 14 1:37am

In reply to @midford "Oh wow. So similar!!! I’ve just had the surgery this past April. Tumour, half pancreas and..." + (show)

constant flushing, constant itching?

jsudjian | @jsudjian | Sep 14 1:38am

In reply to @oilyproudnana "Thank you for your response Yes confirmed NET in 2023 Found nodules in 2018 and we..." + (show)

constant full facial flushing, constant bad itching?

midford | @midford | Sep 14 6:15am

In reply to @jsudjian "constant flushing, constant itching?" + (show)

No. Nothing till the last few weeks. Losing my hair. Dr thinks delayed reaction to surgery/stress on my body. Also diarrhea for a week and seemingly solved with Creon. Lots of bloodwork just done to check things tho. All the best to you. Itching must be very annoying to say the least!!🙁

mhud2 | @mhud2 | Sep 14 7:10pm

In reply to @midford "Oh wow. So similar!!! I’ve just had the surgery this past April. Tumour, half pancreas and..." + (show)

I had my recent oncology follow up visit after my latest CT scan and was asked if I just wanted to forego future scans since it was five years and I asked if she was kidding! Of course I want to continue. I don't want any future surprises!

Teresa, Volunteer Mentor | @hopeful33250 | Sep 15 5:35am

In reply to @pnelson5220 "They found a number of NET's on a standard CT scan done in March 2025 based..." + (show)

Hello @pnelson5220 and welcome! I appreciate you sharing about your NETs journey. The discovery and treatment of NETs are different for each NET patient.

I look forward to getting to know you better and hearing more about your experience. It appears, from your post, that the only treatment you have received is surgery. Is my understanding correct? Was this surgery of the small intestine? Has any treatment been suggested for the liver?

pnelson5220 | @pnelson5220 | Sep 15 8:06am

In reply to @hopeful33250 "Hello @pnelson5220 and welcome! I appreciate you sharing about your NETs journey. The discovery and treatment..." + (show)

Indeed nearly a meter of my small intestine was removed, along with a mass of lymph nodes that were sitting on/near the small intestine (roughly 90 tumors - 1/2 registering positive), then about 1/4 of my liver - taken in 5 slices and one ablation.

markmark007 | @markmark007 | Sep 15 10:10am

In reply to @xosefa "I had a pet scan that showed 20 small nodules, 10 on each lung. Had a..." + (show)

“Just to control and wait”
While this is typical advice given, it also is a gamble especially with NET’s.
1. “Control” - how??
2. My wife had similar advice and after 3 years the tumors had spread to multiple sites.
3. I am not a medical trained individual but you could consider researching if monthly injections may be another option for control. I do understand this has to be approved by your medical team, insurance, etc … given the nastiness of NET’s all options need to be explored.
4. Have you considered a second opinion for a review of your situation?
All the best to you -
Mark

Teresa, Volunteer Mentor | @hopeful33250 | Sep 16 7:56am

In reply to @pnelson5220 "Indeed nearly a meter of my small intestine was removed, along with a mass of lymph..." + (show)

What type of follow-up will you be having, @pnelson5220? Have any other treatments been suggested? Are you feeling OK post-surgery, or do you have problems eating and/or digesting food?