Broad Question

That’s a great question, and the answer is not simple. On this site I’ve read, people have surgery right away, and there are people that treatment, and control of the growth and spread is first.. My experience was to control the growth and spread. My “opinion “ is it depends on your full medical condition as well as the Knowledge of this rare cancer by your medical team.. A Dr. that specializes in Neuroendocrine cancer..Hope you get your answers..

I would guess we all go through a flurry of questions when initially diagnosed as the diagnosis is likely a surprise of the most unwanted sort. That said, there are many effective treatment choices. Here is my understanding of the common wisdom. 1) get to a Net specialist, preferably at cancer center with a multidisciplinary team. There is a lot of variation due to the position of the tumor, the stage (whether it has spread to other organs) and the grade of the tumor (how fast it grows expressed as a mitotic index or Ki-67 score. 2) The decision on whether to do surgery will depend on the above factors but also your preference given the side effects of the surgery and the choices you will have regarding your liver.

Wishing you all the best

I agree with both previous posts. And I might also say that if you can get to a NET specialist before anything is done that would be your best case scenario, in my opinion.
In my case, my tumor was found in my ilium and subsequently removed by a general surgeon along with some of my “body parts” that did and will forever give me issues. I was told later by a NET specialist that he would not have recommend that the surgery had taken place, at least in the manner it was done…but it was too late. In your case, hopefully you can take the time to be fully informed of the best option for you - meds first or surgery first.

I agree with the comments above. Get a NET specialist ASAP. The facts cited by others like grade etc matter. I will add that your insurance matters too and the course of action may be influenced by the insurance company, Hence important to have a NET oncologist that can help navigate this. I did have surgery to remove SINET, GB, cancer lymph nodes 5 months after diagnosis but only after a blockage, ie emergency as this is not what the insurance will approve at first. Since you are Stage IV you may get similar resistance from insurance.

Thank you for that. I didn't think insurance would alter things. It sounds like a cluster.
Only 1 net specialists in my area is coming up on the LECNETS site I think it is. I have other referrals but that look like they might be net specialists but they sure are not on the NET site.