Diagnosis Frustrated: How you were diagnosed with NETs?

I have never had symptoms. My NET's were discovered accidentally during a CT scan when they were looking for a possible hernia. Fortunately, the first specialist I saw was a surgeon at Michigan State University who recognized the NET's immediately. A blood test showed chromogranin A and serotonin levels many times normal. I'm now seeing an oncologist at University of Michigan Health - Sparrow, who has me on monthly Octreotide injections. After two injections, chromogranin A and serotonin levels are near normal. I've had MRI's, CT scans, PET scans and a liver biopsy to confirm the surgeon's original diagnosis and still don't have symptoms. Based on what I read here, every NET case is unique. There is simply no set of rules on diagnosing them. All you can do is work through your primary care physician and keep pushing for tests from specialists until the answer appears. I was very fortunate with the surgeon at MSU, as there are no NET specialists near here.

While the disease appears to have been handled appropriately, the co-pays are killing me. We found an organization called Ameripharma through this forum. Ameripharma supplies the Octreotide directly to the hospital, and appears to have eliminated the $1200 co-pay for each injection. The scans and MRI's are running in the $500-$800 range and the hospital has worked with us to arrange payments.

@eesnerd

How was your diagnosis confirmed? I get abdominal CT-scans every year to monitor my kidney stones. Something "suspicious" in my distal ileum was seen on my last CT-scan. It was decided that the suspicious thing should be investigated.

I got the results from my chromogranin A and serotonin levels. Those labs don't confirm anything but my levels were high. I'm not symptomatic but Dr. Google said my levels were consistent with a carcinoid tumor. I was going to have a capsule endoscopy done. Now my primary care doctor has ordered a Dotatate scan because the capsule endoscopy won't confirm anything either.

I don't have any symptoms of carcinoid syndrome. I'm not looking forward to the Dotascan results. I'm thinking I should just skip the Dotatate scan but now I'm curious about the suspicious thing. I'm worried about what else they will find. If the Dotatate scan confirms a NET --- I'm not looking forward to the treatment either.

I could have the Dotatate scan next week but I have travel plans-cruise to Europe. The Dotatate scan won't be done until early April. Any advice about traveling?? --- my wife thinks I'm being stupid but that isn't a new symptom. My primary care doctor says a NET is slow growing so waiting until April for the Dotatate scan should be okay.

My husband's tumor was found in 1995 after his dr saw a shadow during a colonoscopy. He referred him to a surgeon who felt it would be best to go in to see what was going on. It was a Carcinoid tumor. 1/3 of his colon was removed. 7 of 11 lymph nodes were malignant. In 1995, there was no treatment and he was sent home. Scans, blood tests and 5HIAA tests were done every 3 months, then 6 months and finally yearly for the next 10 years. No treatment was available. Three years ago (28 years later), he was rediagnosed. The tumors have spread to his skull and throughout his body. He is Stage 4 and doing well. At 82, he lives a normal life. He rides an exercise bike 30 minutes a day, does 40 pushups 2 times a day, golfs and basically does anything he wants to do. He is getting Lanriotide every 28 days. Tumors are stable and not increasing as of October 2025. We go to Rochester Mayo the first week of May for CT/PET scans and blood work praying that nothing has changed.
It is important to work with a NETS specialist. We are so blessed that he has lived 30+ years with this cancer and thankful for the reseach that has taken place which is making a difference. There is hope!

I was diagnosed 5 years ago
Have multiple surgeries procedures and treatments done
My primary had yet to be found and according to my doctor it probably never will
I am currently on Octreotide
I found that what I eat effects my onset of side effects
Sugar causes sweating
Caffeine cause irregular heart beats
Dairy, fried foods, spicy foods and some fruits cause severe diarrhea
It took awhile but I have a list of do’s and don’ts
Good luck

@sophiarose I see you are on Octreotide. Is it a once a month injection? Did you have irregular heart beats before taking the meds.? Does the diarrhea get better?

@nannybb
I get an injection every 28 days
I don’t get irregular heartbeats from it
However I did get major irregular heartbeats from Everolimus and only took it for 9 weeks
I still get days of debilitating diarrhea but my diet definitely plays a role to that situation
There are NET cardiologist
Mount Sinai in New York has one
I hope this helps

I have never had symptoms. My NET's were discovered accidentally during a CT scan when they were looking for a possible hernia. Fortunately, the first specialist I saw was a surgeon at Michigan State University who recognized the NET's immediately. A blood test showed chromogranin A and serotonin levels many times normal. I'm now seeing an oncologist at University of Michigan Health - Sparrow, who has me on monthly Octreotide injections. After two injections, chromogranin A and serotonin levels are near normal. I've had MRI's, CT scans, PET scans and a liver biopsy to confirm the surgeon's original diagnosis and still don't have symptoms. Based on what I read here, every NET case is unique. There is simply no set of rules on diagnosing them. All you can do is work through your primary care physician and keep pushing for tests from specialists until the answer appears. I was very fortunate with the surgeon at MSU, as there are no NET specialists near here.

While the disease appears to have been handled appropriately, the co-pays are killing me. We found an organization called Ameripharma through this forum. Ameripharma supplies the Octreotide directly to the hospital, and appears to have eliminated the $1200 co-pay for each injection. The scans and MRI's are running in the $500-$800 range and the hospital has worked with us to arrange payments.