Was yours typical or atypical carcinoid

@jessie1990 I have one primary tumor in my pancreas that was about 8cm. It is called the primary because it distributes the cancer through your body like a good midfielder in soccer. I hope you are a soccer fan? A lot spread to my liver and pelvic bones. But, some also spread to my bones from my tibia to my skull. I found out where it all was with a pet scan that used a contrast called gallium-68 dotatate. It attaches to NETs, so the scan can show where it all is. I still get them. A biopsy showed how fast it grows using a ki-67 grading system going from 1 to 4 with a 1 being the slowest and 4 being the fastest. I am a grade 2. Please understand that I got really sick right before covid hit. It was very hard to see a doctor let alone go through the process to see a NET specialist. My specialist suggested that I had the cancer years before it was ever an issue. It seems that yours was caught early. Please don't be alarmed. I know that is easier said than done especially for us folks with a little Irish in us. I have been alarmed myself. Please keep asking questions. The only dumb question is the one not asked OK?

So you are a big city lass from Cork? I have a brother and sister that visited there years ago. They say that the city is beautiful and the people even more so. They felt like they were visiting family. My wife and I were recently discussing a trip to Ireland and Scotland. My last name Rennie is Scottish. I find it quite ironic that our paths crossed here.

@jessie1990
I want to note that after reading so many stories of both GI NETs and lung NETs that GI NETs treatment seems harsher and it seems it is more likely to spread than lung NETs, at least that typical carcinoids in the lungs. Those seem the least likely to spread although not unheard of.

Over 50 nodules were first seen in my lungs in 2008. Also, based on symptoms I’ve had DIPNECH for 35-40 years so the nodules were around then. DIPNECH is super rare with 300 documents and is multiple benign neuroendocrine nodules that can progress to NETs like mine did many many years ago. While I have advanced DIPNECH, after all these years my very slow growing atypical carcinoids are still stage 1 because they have never spread outside my lungs. I had the largest one 2.6 cm destroyed with microwave ablation because it was growing faster than others