Why is seeing a NET specialist important? How to find one?

Good luck with navigating to a NET specialist at Cleveland Clinic:
https://my.clevelandclinic.org/departments/endocrinology-metabolism/depts/adrenal-neuroendocrine-tumors
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I'm still navigating myself through the VA bureaucracy. I used to work at the University of Iowa until I retired. My wife was an oncology nurse at the University until she retired. The challenge has been coordinating with all the specialty team members both at the VA Hospital and the University. All of the "specialty team members" except the actual NET specialist work at both the VA and University Hospital.

Thank you so very much for the link to Cleveland Clinic. It is very welcomed and appreciated. I wish you the very best in your efforts to coordinate your NET care. It sounds that between you and your wife there are loads of skills and knowledge to lubricate that process into a success. I wish you the very best.

(My very good friend of the last 60 years lives in NE Iowa. So, I have a real soft spot for Iowa!)

@patrick031621 I was first diagnosed one year ago with NET. My condition has improved since then, I am one month away from my last of four Lutathera treatments and get a Octreotyde injection monthly. I am curious, if you don’t mind sharing, what medications or treatments you are on after 23 years. By the way, I know each case is different, but seeing someone with this many years gives me some hope. Thank you

I will begin by answering your question directly. I have been taking octreotide for 13 years. I think it has had a good effect on helping limit any issues. I have never had flushing but have had to deal with diarrhea. I have read or heard that for about 20% of the individuals who take it, it also retards the spread of the tumors. I have taken nothing other so perhaps that is the case with me and it. I have had one surgery 11 years ago because of intestinal blockage caused by carcinoids in my lymph nodes in my intestines which resulted in removal of about a foot of intestines. Because of that I have had a resection and it has caused a drastic change in my diet and a struggle to maintain weight. But I am highly functional physically regardless. We need a lot less weight than we think to maintain ourselves.
Now what follows is opinion and what I have experienced as an individual. I stress always that everyone is different and faces different challenges on this and one of the challenges is the medical advice and opinions you get. I have never seen an NET specialist but I also have never had the syndrome which somewhat limits my knowledge. Do you have the syndrome? I have worked with the same oncologist for 23 years and I trust him and he has also learned I have a mind of my own. He presents the possibles for me and I make up my own mind about them.
Here is my reality. I am 80 years old now and one’s age has a bit to do with what one does I feel. I was offered Lutathera as a good possibility for me three and a half years ago but I passed on it. I was told that I could have real problems in a year by the presenters of this therapy but nothing has changed at all in my condition. I feel as good as ever. Mine is metastatic and has spread some in the past few years with a little growth to my skeletal structure but in key areas like my liver and heart and mesentery it has remained dormant there, with little or no growth. One has to remember that from when I started medical technology has improved tremendously and they are spotting things now that weren’t apparent before. The heart lesion was spotted three years ago but how long it was there is anyone’s guess. It hasn’t changed any in the intervening years. Outside of the octreotide( had an injection today by the way) I have become a watch and wait person. I get bloodwork 4 times a year now, see two different oncologists twice a year and for the first time am only getting an MRI and CAT scan once a year as opposed to two or three times . I also had a kidney issue in the past year because of a separate and unrelated problem and so am more concerned about that than the carcinoids. I do watch my diet which I think helps and this has no proof and is just a belief. I have never had advice on this specifically. I don’t drink alcohol or have ever smoked or done drugs, I don’t eat anything with refined sugar which is a lot of things, not to mention sodas and fruit drinks of any sort--I only drink water and a cup of coffee in the morning. I eat no processed meat or highly processed foods. I don’t eat at fast food places. I don’t do dairy except cottage cheese. I do eat salmon, eggs, chicken, sardines and occasionally very lean beef, potatoes, cauliflower, broccoli, peppers, tomatoes and tons of spaghetti. Bottom line is I feel good and I don’t want to be caught up being too concerned with this number or that number.
Of course a major change in my condition will have me reconsider, I think.