@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.

@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.

@jerrydanhuffman
There are no NET "specialists" within a 500-mile radius of my location city. I was diagnosed with ileum NET 18 months ago and had surgery to remove a primary tumor, ileocecal valve and two affected lymph nodes. My cancer has spread, and I have 6-7 lymph nodes that are considered to be surgically inoperable. After many months of trying to get a 2nd opinion on my diagnosis and treatment, on 15th October (yesterday, in fact), I completed my first appointment at Cleveland Clinic Taussig Cancer Center. I am 1000% elated with the results of plans to develop a long-distance (1,100 miles) relationship where testing may be ordered by knowledgeable and experienced doctors at Cleveland to be performed at my local hospital and test results can be relayed by Cleveland doctors by video or other means. I returned home at 7 pm this evening from Cleveland but am so very pleased and looking forward to the future, that I had to post this update. We already have a number of additions to my treatment in the works. My youngest son went with me to be the "donkey" who carried the old man's (I am a month away from 82.) backpack - something I've never had on my back until our flight to Cleveland. My heartfelt thanks to Cleveland Clinic!