Wow, sounds like your son has had a really rough go. I’m sorry to hear that anyone has to go through this. My first suggestion would be, which it sounds like you’re doing, is find a NET specialist or experienced oncologist. That physician should be able to refer you to any other specialists he may need to see that are experienced with NET as well, such as gastroenterologist, endocrinologist, etc.. Then, I’d advise you to then get a second opinion! NET is my second rare cancer, and I was given some very bad advice and guidance with my first cancer. The oncologist he’s going to see may be able to refer you to another specialist for a second opinion. I’ve had oncologists get fuming mad because I was seeking a second opinion (I didn’t see him a second time) and I’ve had some offer to refer me to someone for a second opinion. If it’s difficult finding a specialist with NET near you, my experience has been specialists at the big cancer centers will work closely with your local oncologist. I live near St Louis and we have several cancer centers and one fairly well known center, which treated for my first rare cancer. I also saw specialists at MD Anderson. It turned out that my physicians shared several patients and actually knew each other. It’s a small world in the rare cancer community. When I was diagnosed with NET, I immediately reached out to my oncologists (whom had released me from their care, 10 years post treatment). They both got me in immediate contact with a NET specialist at their centers, whom, as it turned out, knew each other. It was quite reassuring having the added opinion to help me know I was on the right track.
Next, I would encourage you to join LACNETS.org. It’s another wonderful resource for NET patients and caregivers. They frequently have podcasts which can be easily viewed after the broadcast. My experience has been the specialists that take part readily answer questions and many offer their contact information in case other questions arise later.
Best of luck to you and your son as you traverse this new territory.