New spots showing up

At 72 you probably have a bunch of other co-moribities. Nets are like a wart. They never go away . You're more likely to die from sepsis from dirty hospital/clinc furniture. Basically, don't sweat the spots because you got plenty of years left.

@tomrennie You have been on chemo 3.5 years. That is a long time. How do you feel? Did you have any other treatment beforehand such as PRRT? And did it work and for how long? I hope you are doing well now. Honestly.

Hope you’re getting along okay with that. I feel like we’re all in this together! Best of luck to you!!

@tfoucaul I have heart disease and other issues. My husband has ALS and now also leukemia. My daughter had a double mastectomy in June with triple negative breast cancer . It’s been a rough time!!

@cindypat1
Sorry to hear about that. Fortunately, the lure of big profits have encouraged drug companies to make improved treatments for cancer. I wish I knew what caused stage 4 pnet. Maybe it was constantly being around jet fuel and exhaust or maybe it was from the poisons our government allows to be put in our food? Maybe it's tainted ground water from fracking? Genetics or just bad luck. Been dealing with this since I was 42. Going strong on 8 years without any surgeries.

@mmar2025 My cancer is too spread out, so my only treatment option is something systemic. That would be chemo. I was really sick when I got diagnosed, so I feel amazing now compared to then. The beginning was difficult, and I still have a few crappy feeling days at the end of each 14 day chemo cycle, but I thoroughly enjoy waking up each day. I live an active life. I actually just got back from a spring training baseball game. Thank you very much for asking.

It's absolutely frustrating. Dropping bombs on us nonchalantly. Sent to multidisciplinary centers to see the net specialist that focuses on the first diagnosis site. This rare disease can metastasis anywhere and I don't know if the location where it was found was where it started. Spots and nodules popping up everywhere and still the oncologist sends you to the specialist gi,endocrinologist, pulmonary, etc. Where is the multidisciplinary...obviously they don't know and that's okay just get me where i need to be. My 3rd hospital group opinion and I don't know anything more than I did from the first dr.. I'm 🙏 for us all

@brewmano, I'm just catching up with your story in your profile and messages. You have been on a long and winding road to a diagnosis and that your NETs diagnosis has not yet been confirmed despite getting a third opinion. Unfortunately, several members here have reported similar challenges on the path to finally being diagnosed with NETs.

I'm sorry to hear that your frustration continues even in the care of NETs specialists in major centers with multidisciplinary care.

Do you have a treatment plan? What are the next steps for you?

@debbieg99, what were the results of the tumor board discussion? Any updates?

@colleenyoung thanks for asking. The one larger tumor is to be ablated and continued Lanreotide treatments for the smaller lesions as none has grown since November. Also of course, regular monitoring by CT every few months. Very good news in my opinion!