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

@jerrydanhuffman

Jerry
You have me smiling. Congratulations to all, You, your son, and the Cleveland Clinic!!
Love Good News.

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.

@hopeful33250
My son attended the appointment with me. He told the doctor that one of my family should be with me to protect the doctors from me. Typical elder respect from youngest child to father. I told the doctor that he was only there to carry luggage. We had a wonderful time together. He was very impressed with the doctor. More details later.

@jerrydanhuffman
The oncologist at Cleveland Clinic has ordered CT Scans with dye to be performed immediately and repeated every 6 months. She took the time to review my previous scan from a year ago that no one has ever examined with me. Slice by slice, she relayed information about which I was not aware. She will video conference me with the results of the first scan. She said she would review all of my blood test results from the past 18 months and all of the cardiac testing that was done at my first hospital and report back to me. After that we will mutually make decisions about where and how to go forward to ensure our long-distance relationship can be mutually beneficial. She strongly advised me to change from my local oncologist to another hospital, but after checking insurance coverage, that doesn't appear to be economically feasible. I am tentatively planning to ask for an internal change at my current hospital immediately after my next lanreotide injection in 2 day's time. She is studying changing my lanreotide injections to octreotide in an effort to lessen side effects and reduce co-pays. She has forwarded a number of links to patient support sites. She stated her commitment to make our doctor/patient relationship work from 1,100 miles. There is a smile on the outside my face and one very big smile inside of me. Thank you and everyone for kind encouragement and support and special thanks to my youngest son and "donkey" for his muscles and wonderful companionship.