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.

@patrick031621 You are a role model for not only surviving NETs but thriving in life with them!!! I hope to be you someday.

@patrick031621

Thank-you for sharing your experience. I'm struggling with certain decisions and this helps me decide what to do. I started Lanreotide and recently did my 4th injection. I'm going to wait to see what happens next because I can't imagine having any sort of resection at my age (72). I have heard how Lanreotide can decrease hormone levels and shrink tumor size so I will wait to see what Lanreotide does. Some scans will be repeated after my 6th dose of Lanreotide.

My doctor supports my decision for starting Lanreotide and delaying surgery. However, he also said he can almost guarantee a bowel obstruction sometime in the future. Surgery was recommended because of the possibility of a bowel obstruction. It was also stated that surgery might be a cure. It would be better to do a resection under "controlled conditions" instead of doing surgery under "emergency conditions" if a bowel obstruction happened.

I have some metastatic lesions with functional NETs because of my elevated hormone levels. I think my doctor is surprised by my lack of symptoms. My doctor said I might not notice any symptom improvements from Lanreotide. For now, there is some question about whether or not I have carcinoid syndrome. My decision would be easier if I had more symptoms. I don't ever want a bowel obstruction though. I know what "obstructions" feel like but not a bowel obstruction.

I had some symptoms after my first three Lanrotide injections. My 4th injection wasn't so bad. Symptoms from the treatment with Lanreotide are somewhat worrisome too.

I can help you here by my experience. I did not know there was such a thing as bowel blockage from carcinoids so in 2015 while watching a baseball game, I got an intense pain in my gut that I thought was just a stomach ache from eating the wrong food or not eating enough. But it was the first sign of blockage. If I knew about it I would have had my wife drive me immediately to the hospital of my oncologist but I didn’t. the problem then was the food has been breaking down and doesn’t travel like it should and becomes toxic and that gave me symptoms of having a stroke which can get you misdiagnosed and get you killed. The long and short of it was my six children got me in time to the right hospital at the right time for the right diagnosis.
So here is what happened after ascertaining my blockage problem and emptying my guts of all that was trapped in me, through the nose and down the esophagus. My surgeon, Ryan Fields, said that he wasn’t sure if it was a partial blockage or a complete one and so he wondered if it might be possible to avoid surgery and so we tried that but it didn’t work. And so he finally did the surgery and it was successful, removing about ten inches of intestine including my ileocecal valve. And of course I had a bowel resectioning. What I liked about my surgeon was he was always up front about the situation and he had always tried(I had a previous consult with him about another carcinoid problem) to see if there was a solution that could avoid surgery. I prefer surgeons like that and I think the best ones are like that. I met him some years ago in a different hospital than he is now but currently he is chief of surgery at the University of Rochester’s school of Medicine and Surgeon in Chief at Strong Memorial.
And here is what I have had to live with since---my diet has radically changed and been limited. I always have to be aware of where restrooms are especially when I travel. It is best when I leave my home to have had a good bowel movement, preferably emptying, before leaving. My life is ruled to some extent by my bowels. When I leave my home for almost any period of time I do not eat or drink anything as that can trigger without warning and with little control, a bowel movement. I have trouble gaining weight at all I can’t do sugar, fats generally or dairy with the exception of cottage cheese. I never drink a whole glass of anything(water) straight and cold is the worst, I have to drink in sips.
I had a major flatulence problem for some years but as time has goes on that at least has corrected itself. Perhaps my strict adherence to my dietary regime has been a part of that.
My message is that there is no free lunch here. There are some permanent side effects of having some of your intestines removed. It depends on what parts of the small or large intestine and how much. We pay a price for such a procedure but it is either that or die. One manages and learns how to handle it and not just to cope.
Oh, and as to your age, I know what you mean. I was 69 but i had no choice. I am not a big fan of a preemptive strike but avoiding surgery means any sharp continuous pain means to the hospital immediately. You need someone around to make the right decision for you as you may have lost a bit of the capability of doing the right thing because of the toxin to your brain. I I think I was already not thinking right when I first had the physical pain. I can’t remember that time too clearly. Again when they talk about removal the issue is how much and where. Every part of your small intestines do different things and absorb different vitamins, minerals , nutrients etc…. As I mentioned above since the surgery, I literally can’t handle sugar. Refined sugar like in donuts and sodas and breakfast cereals means almost instant diarrhea. No problem at all before surgery.

If you don't know or haven't checked out the basic mechanism of blockage, here it is:

The tumor spreads to nearby lymph nodes.
Small-intestinal carcinoid tumors commonly spread through lymphatic vessels to the mesenteric lymph nodes.
The lymph nodes can become enlarged and contain tumor cells.
These deposits can form a mass in the mesentery, the tissue that supports the intestines.
A desmoplastic reaction develops.
This is particularly characteristic of small-bowel neuroendocrine tumors. The tumor can trigger production of a lot of fibrous, scar-like tissue around the tumor and lymph-node deposits.
The mesentery becomes stiff and contracts.
The fibrosis can pull on and distort the nearby intestine and its blood vessels. This may cause the bowel to kink, narrow, or become fixed in an abnormal position.
The result can be partial or complete obstruction.
The blockage isn't necessarily because a lymph node is simply "plugging" the intestinal opening. More often, the tumor + enlarged lymph nodes + surrounding fibrosis distort and constrict the bowel from the outside.

Why this can be confusing

A person can have a fairly small primary carcinoid tumor but significant bowel problems because the secondary effects in the mesentery can be much more extensive than the original tumor.

Symptoms of obstruction can include cramping abdominal pain, bloating/distension, nausea, vomiting, and difficulty passing stool or gas. A complete obstruction can be an emergency.

@patrick031621 Thank you for the amazing education. You explained the long term consequences of not getting treatment and the body's process of getting there. I really appreciate it.