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What should I do? Carcinoid symptoms but no answers.
Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (44)Comment receiving replies
Hello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small bowel) neuroendocrine tumor last year. For at least 2 years before that he started having flushing of face and chest. Of all the hormones measured, testosterone levels were abnormal. Later after his diagnosis, we think this is related to the liver metastasis. As for imaging, ultrasound or initial CT scans were not helpful. What was needed was a MRI, followed by liver biopsy and then a PET dotatate scan confirmed the diagnosis. He is on monthly Lanreotide shots which controls his symptoms.
I would definitely advise you to consult with a NET specialist.
Replies to "Hello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small..."
was is testosterone high or low
@mimighosh thank you for sharing your story. How is your husband. My husband at 49 yrs old had a SI resection due to a blockage in Jan 2025 after a trip to the ER for what we thought was a gall bladder attack. Biopsy showed SI NET in Ileum → G1 → Ki-67 <3% → pT3N1 → 10 of 17 lymph nodes positive → negative margins. So far no evidence of distant metastasis. PetScan in Dec2025 showed a 5mm node lighting up and in Jul2026 same area but 8mm and now lighting up at a second adjacent point. His oncologist said wait and watch but we reached out for a second opinion in which the new hospital reanalyzed his tumor samples and this week reclassified as Ki 67 10% which makes it a Grade 3 now so growing faster than we first thought. Yesterday I posted a question about side effects of Lanreotide. My husband read many negative comments on Reddit about bad side effects such as diarrhea, depression, very sore injection site etc. Any insight would be greatly appreciated.
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Did he have Covid 19 prior? I'm 57 with similar situation diagnosed at 54 1/6/23. I'd say my symptoms went on for 2 years after I had COVID.