What does the future look like for a stage 4 NET patient?

Posted by jameshoch @jameshoch, 3 days ago

This is my story....A lobectomy of upper right lobe of the lung in 2016 It returned in 2023 with a tumor in a lymph node behind my heart. Followed by radiation and chemo. In 2025 I was diagnosed with stage 4 NET's. New locations are in the bone, (12th rib, hips) liver and the now smaller tumor behind my heart. These are small lesions and tumors/spots. I feel great, exercise often in good shape but I'm wondering what others have experienced and what I might do to better my future outcome, what I can expect in the future? Just any advice or thoughts would be very helpful. Thank You!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jameshoch | @jameshoch | 16 hours ago

I'm personally searching for a "medical captain" that oversees, understands and provides guidance regarding how the medicine, active life style, nutrition work together with the goal being a plan that results in improved quality of life. (For instance what activities are best and how to monitor.ie strength training, cycling? walking (endurance or High intensity, frequency? Best Nutrition? Management of other health issues...I now have high sugar levels-perhaps the sandostatin? which now I take metformin. Not a fan of the pills and always seeking alternatives. Thank you you for listening. Greatly appreciated

rkklinger | @rkklinger | 14 hours ago

In reply to @vinnie694 "@jameshoch If you don't mind me asking which Mayo location do you visit? I go to..." + (show)

@vinnie694
My husband goes to the Rochester Mayo and Phoenix Mayo in the winter.

Turkey, Volunteer Mentor | @tomrennie | 7 hours ago

In reply to @jameshoch "I'm personally searching for a "medical captain" that oversees, understands and provides guidance regarding how the..." + (show)

@jameshoch Finding that person would be nice. In my experience, that kind of coaching comes from a multidisciplinary team at comprehensive cancer center. You are your captain after engaging the resources available on your team. Study, learn, and develop a plan with them. There isn't a cookie cutter solution. What works for me might not work for you. Our bodies can react differently to the same cancer, in the same places, the same size, with the same treatment. It is great to have a plan, but initially, it might need some tweaking. You, and your multidisciplinary team, will make adjustments as your treatment progresses. Your thoughts?