Hello. I am new here. My husband was recently diagnosed with NETs.

@laree my NET also started in the pancreas. The initial diagnosis is ground shaking. In fact, we reviewed the biopsy results before speaking with my PCP, which was a mistake as we thought the worst. I am two years into this journey and confident I’ll live a long a fruitful life. Tell your husband to stay positive! There are so many new and effective treatments available and new ones appear almost daily. Please don’t hesitate to reach out to me directly. I’m willing to speak with him as well should you or he desire to speak with someone who’s on a similar journey. All the best - Tom

Thank you for the kind words! It has been exactly like how you described. I never had read my husbands report from a ct scan on his chart as you log in. He was telling me what it had said, and we thought it was the regular pancreatic cancer. The dr called and said that tbere is surgery and ways to maintain it. During that phone call, I think we needed to ask more questions!!
Also from the inital call after the ct scan. I think they know before the biopsy is done, what it is.
I don't remember the dr explaining it was pnets. I just thought, maintain it for how long, until we can't???Then we were waiting for the biopsy report to confirm and praying it was benign. Then the biopsy said it was Pnets. Clearly never heard of pnets before. It sounds like they are slow growing so that is a good sign. But I do remember when they announced that Steve Jobs passed away from this disease in 2011. That looks very scary. It sounds like since 2011 there has been alot of changes as to how to treat this disease from what I understand. All the best to you as well!

My wife was diagnosed with stage 4 NET in April 2022, now after chemo, surgery, PRRT she is in a good spot, and she is getting a liver transplant (not a normal path), but we have a great medical team including a NET Specialist, which is a must since NET is very rare and most oncologists haven’t had many cases. We all got you, let us know what questions you have. So be your own best advocate, research, and get a team on your side.

@laree - I have been in this journey for 2+ yrs. We also thought it was a pancreatic cancer in the beginning. But- there are new and effective treatments! I am stage 4 grade 2 pNET. Had debulking surgery ( liver metastases), distal pancreatectomy, my spleen and gallbladder removed.
I am on Lanreotide every 28 days, take Creon (digestive enzymes) and have CT scans every 4 mo to monitor the treatment!
You got this! Stay positive! There is life after this diagnosis!

Thank you so much for sharing your story. You sound like you both are very strong with all of this. Just try to remember to take one day at a time. We have one great son and he is still in middle school. We have been keeping this to ourselves until we have a course of action. There is no need to worry our loved ones

Thank you for your reply. You guys also seem very strong with all that is going on. Sometimes I think the waiting can be the worst. We have an appt with the regular oncologist that our dr referred us to; but I think that might be a waste of time. We are waiting for a specialist to call us back after looking at my husbands records currently.