Neuroendocrine Tumors and Me

NETs/Carcinoid 1.1

TLDR: Flushing for 1 year, ENT ordered blood tests, PET with DOTATE, surgery to remove tumors, on lanreotide

Appendicitis

In 2016 I got an appendectomy. But it was somewhat unusual in that it was caused by appendix with low grade appendiceal mucinous neoplasm. This is also known as LAMNS (https://www.mskcc.org/cancer-care/types/appendiceal/diagnosis/types/low-grade-appendiceal-mucinous-neoplasms-lamns)

Slides were read at both Mount Sinai and Memomorial Sloan Kettering. I was told by both hopsitals to have colonoscopies every few years which I did and which were all “clean.”

I put the appendicitis details in there just for history, it is unclear but doesnt seem like its related to NETs.

Flushing

About a year ago I think, so sometime in 2024 I started flushing. Occasionally people would say to me, your face is very red. It would go away within 10-20 mins. It would be on my face and chest. Splotchy. My primary care doctor suggested it was histamine related.

I did ask ChatGPT/Llama/Gemini and they all included a list of a few possible options, Histamine and Mast Cell activation was always the most likely item but also usually mentioned Carcinoid/NETs.

Testing

I went to the ENT (ENTandallergy.com) and the doctor there ordered 5HIAA and Seratonin blood test among others. This came back very elevated for both (5HIAA 55 normal range 0-6, Seratonin 1500 normal 0-200). So this pointed to Carcinoid also known as neuroendocrine tumores (NETs).

Decision

I spoke to doctors at Memoral Sloan Kettering, Mount Sinai and Weill Cornell. Memorial Sloan Kettering suggested biopsy, lanreaotide and waiting to see tumor growth. Mount Sinai and Will Cornell both suggested immediate surgery to debulk and then grading of tumors removed and lanreotide.

I decided to go with Mount Sinai.

Surgery

Went in July 22nd. All in all, was stressful because its surgery, but the hospital was well run and it went smooth. I was in the hospital for 5 days. It was open surgery. The worst part was the prep before hand, not eating and all the antibiotics made me feel terrible. The pain afterwards was well managed in the hospital.

I have included the PDF links at the end for the surgery. In general, removed gallbladder, part of small intestines, a few lymph nodes, and debulked 90% of the ~20 tumors on the liver. Staples were taken out after 2 weeks.

Also, just getting poked and prodded. New lines put in, some taken out, drawing blood over and over again. Cant find a vein, putting in another. That part just gets so tiresome. Walk around the hospital floor, but there are lines everywhere, its soo cold in there.

Next Steps

In 4 months I will be scanned again to establish baseline for future tumor sizing.

When someone says “you have cancer” its a emotional roller coaster. Googling and now LLM/GPTing is informative but studies for NETs are not that numerous and some are from decades ago. The prognosis has improved since then as well as there is a significant variability in cases. Because my tumors have spread to the liver its considered Stage IV, however spreading to the liver is much better for prognosis then spreading to pancreas.

I did go through the range of “am i dying”? When will I die? Anger. Grief. Acceptance.

Random Musings

Weill Cornell said you could export the imaging via website, and I could see it, but easily getting it to Mount Sinai wasnt easy and in the end getting a literal CD was easiest. But the DICOM files are actually relatively small, like 50MB-150MB. And there are open DICOM readers online that I could use to read the DICOM. So this part of digial infrastructure getting better but not perfect.
NYC has so many great hospital options. Makes it easy to get multiple opinions. Mount Sinai and the doctors there are fantastic.
The oncologist says the tumors have probably been growing inside me for decade +. But I do wish that I had caught it 1 year earlier when flushing started. If you just google “flushing causes” or use LLM etc for flushing causes, you mostly get other causes. Its “ if you hear hoofbeats, expect horses not zebras.” Doctors as well as Google/LLM will go for the more likely answer first. BUT, it seems like quest labs/labcorp etc can just do these blood tests like Seratonin easily? Is it cheap? Why as part of blood work are we not able to just test the full list of Labcorp tests? Flushing? Test seratonin?
should i include a GPT/Gemini/ etc link with all the pdfs, lab results, questions etc prepulated? Is that the future? “Do you want to ask questions, chat with this medical case to learn more!”

Documents

2016 Pathology 2025 PETCT 2025 GI Surgery Report 2025 Liver Surgery Report 2025 Pathology