@jessie1990 I think typical carcinoid is more common
. My biopsy was classified as typical and the tissue samples after surgery were also typical. I was told those are the slowest growing type of carcinoid. My dr said the only reason he recommended removing that small lung section was because it was in the narrow area going around the heart and was preventing infection from clearing. He said as I aged, lol, I would be more vulnerable to pneumonia. Something very interesting was my mom was diagnosed with a typical carcinoid in her pancreas at age 88. The drs said that it had probably taken 40 years to become noticeable. Considering her age, they recommended a wait & watch approach. She returned once a year for 3 yrs to have a scan. It actually disappeared! The human body is an amazing thing.
You are much younger than me, but you seem to be in the right place. In the United States there are only about 3000 drs who have specialized in neuroendocrine carcinoids. Something in one of your posts made me think you might not live in the US?
There are some excellent videos on YouTube of speakers affiliated with the neuroendocrine foundation you might find interesting. There is also a neuroendocrine carcinoid group on Facebook. I read a few stories, but I’m not a frequent user of FB. Too often unscientific recommendations are made by uneducated people and quacks with a cure sales pitch mixed into posts.
Last thing, my Dr said if the tiny spot in my lung turns out to be another carcinoid, he would not recommend another surgery, not good to keep reducing lung capacity. He would recommend immunotherapy. I don’t like the thought of that but I have a friend who is taking immunotherapy for a rare type of lymphoma cancer and she is doing great, looks wonderful.
I remember when I first was diagnosed I searched these discussion boards for people who have our type of carcinoids. Seems very rare. After watching some of the YouTube carcinoid foundation videos I learned that some people are not being diagnosed correctly because there are pathologists, pulmonary drs who have minimal experience with neuroendocrine typical or atypical carcinoids.
You must be in the right place because your tissue biopsy has been thoroughly analyzed.
I’m fortunate to live about 90 minutes from a Mayo Clinic where care and research go hand in hand.
Start planning a cruise.