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

I didn't do an extensive search for a NET specialist. My PCP, endocrinologist and several other doctors that specialized in other areas of medicine all directed me to a NET specialist. The NET specialist happened to be at the hospital next to the VA hospital in Iowa where I live.

Now I have seen all the other doctors who are part of the "team" but they all say they will listen to the NET specialist. If all the other specialty doctors will follow the NET specialist's lead, I will follow too ... except for doing surgery which was recommended.

Artificial intelligence knows where it is. The VA system was convoluted but that has been straightened out so I feel like I'm headed in the right direction.

This is excellent information! Thank you for providing it.
http://www.netrf.org has a directory of specialists by state and many of the listings include what percentage of the practice is dedicated to Nets.

This is an extremely helpful guide. I am blessed to have a NET team but your differentiates even the types of scans for those who need that information.

oops.... your article differentiates....

The very large hospital group in my city refers to my "care team", consisting of a Primary Care Physician (who I've only seen in person twice since a year ago. The second time was a week ago. I end up with his nurse or his PA), a urologist I only see every 6 months, and an oncologist with no NET experience. The "team" members have never spoken to each other, and between the 3 of them could not collectively conjure up one fact about their patient that is not on the chart. This is the second hospital group I've had since my NET diagnosis. Not long after my first lanreotide injection at the first hospital, my health insurance and the hospital became crosswise with each other over networks, forcing me to move and start all over again with all new doctors. I have pared down the numbers of them from 7 or 8 down to three. I chose to live here. NET chose to live in me. There is no medical organization here for that last part. I am not going to give up, though. I have had a bit of success today in getting referred to a local endocrinologist with at least some NET experience. An appointment should be set up within the next couple of days.

In my efforts to try to get some multi-disciplinary assistance with my NET, I asked for a referral to a local Endocrinologist who has some experience with NET. I was advised today that she denied my referral because she doesn't treat patients with NET. She said I would need an oncologist or a gastrointestinal professional. All of my records from two different hospitals were sent to her. I have an oncologist. If anyone can make any logical sense out of that, please let me know.

Who you need depends upon what your condition is. If you have the syndrome it is one thing and you probably need a NET specialist. But everyone is individual. I have lived with mine for 23 and a half years and have needed one surgery, a bowel reconstruction, eleven years ago. My oncologist is not a NET specialist but I think he has made all the right moves with me and gives me good advice now. I think at this point it may yet get me but maybe something else will. You can't let it drive you crazy. Maybe it is easy for me to say as I am still here and feel good and functional but you can 't let it take your life over because it will. It started that way with me.
Again I don't presume to talk or advise anyone with the syndrome.

@jerrydanhuffman

I was seeing a "general endocrinologist" prior to a NET being discovered by my primary care doctor. I told the general endocrinologist about my hormone levels being elevated because I thought he would manage the "endocrine part" of my NET. My general endocrinologist referred me to a NET specialist so an oncologist could do the "cancer part" of my NET.

Now I have a NET specialist who specializes in both Oncology and Endocrinology. I don't think there are too many doctors that specialize in both. A physician specialized in both medical oncology and endocrinology is exceptionally rare

I get my medical care at a VA Hospital. I didn't do an extensive search for NET specialists because there was one across the street at the University Hospital next to the VA Hospital. Coordinating services between the two hospitals has been a bit of a challenge.

I applaud your exceptional good fortune in having multiple specialists nearby and especially in finding one who specializes in the cancer part and the endocrine part. I wish you the very best with your treatment.

I thought it was exceptional luck to find a physician in my area with any experience with NET. (My oncologist has none, and I am the only NET patient at a very large cancer center.) I was very surprised that the Endocrinologist denied my referral. I have to wonder how she got experience with NET if she doesn't treat patients who have NET. - Just a thought (?)...

@jerrydanhuffman I recently learned that it is quite common for endocrinologists to deny referrals from NET patients, as many endocrinologists focus on glands and diabetes. I am now awaiting results of a referral to a gastroenterologist who can address GI issues resulting from NET's. Meanwhile, I am researching an in-person multi-disciplinary consultation at Cleveland Clinic, where my health insurance is in-network.