Welcome to the NETs Group! Come say hi.

I’m new to this world of Oncology as well. My dx NET tumor with metastasized to liver. I’m in first week of treatment and have had few side-effects so far, but feel scared of what lies ahead.
My best to you and hope you can be optimistic on this journey of NETs.
Hermit in Hemet

PET Scan findings today: Confirms neuroendocrine on tail of Pancreas.
No other neuroendocrines found.
Ancillary chest findings: small sub pleural nodules along the posterior of right lower lobe at 6 mm.
Scattered diverticulitis and moderato coronary artery calcifications.
Also on left lobe of liver a 5.3 cm lesion (This has been found on various other test several times). Should there be more follow-up on the liver? Will ask oncologist.

Good news concerning my PET Scan! No other neuroendocrine tumors found.
Prayers for all of us on this NETs journey.

Such good news, @suzyis7. I'm so glad that you shared your good report.

Hello everyone. New to everything. Stage 4 but what is NET? Diagnosis is Neuroendocrine pancreatic tumor that has spread. But live in very backwoods setting and they are so busy here at my small cancer clinic that they spend minimal time with me. I have no idea what to expect and what I can do to help myself

I am also like you. I am new to this, but my diagnosis is worse in that my pancreatic tumor has spread to other organs. I have a spot of it in 5 locations now. But I feel good still feel healthy. Today's visit did not go well as they found the start of 4 more in my liver. But I have no idea what to expect or what I can do to make it easier. Maybe we can learn together?

Great. That seems positive! Prayers to you. I feel so stupid and uninformed! And I want to learn what to expect and things that I can do.

Hi Teresa. I now know that I am NET. I didn't even know what that was , however I am new. I did the chemo last year and I will be starting the injections this week. But my NET is everywhere!! It is in 5 different organs/ or locations. And today I discovered that instead of one 5cm spot I now have 4 more in my liver. So as I read everybody's posts I realize that . But I feel very good and healthy. No side effects yet except that I get tired easier.

Hello @sweet63,

Oh, I can so understand your concern! So many of us with a NET diagnosis have worries and concerns regarding having a diagnosis such as this and when there are multiple locations for the NETs it seems even more worrisome. I would like to introduce you to @patrick031621 who has had a NET diagnosis for 19 years now with multiple tumors in different areas. I hope that he will share some of his experiences with you. I would also like to invite @kim1965 and @gneiss50, to post with you. They have also had multiple NETs.

You might also find Mayo Clinic's NETs support group helpful to you. (It is not necessary to be a Mayo patient to attend this group.) Have you attended this group? It meets virtually, via Zoom, on the first Thursday of each month at 5:30 EST. Here you will meet with other NET patients who share their journey during the meeting. Look for information about the next meeting in the NETs discussion group. I'll be sure that you get the notification.

As I learn more about your journey with NETs, I'll connect you with other members who have a situation similar to yours. You mention that you had chemo last year. What type of chemo was it? Are the injections that you are starting this week Octreotide or something else?

Hi @sweet 63,
My wife Kim was diagnosed with NET in April of this year. We were devasted at first, after all the tests, it was determined that she had NET's with numereous spots all over the liver and a mass attached to the tail of the pancreas. The best news was that it was NET's, and not the more often diagnosed pancreatic cancer. NET's has a much better prognosis over 5 years. Our Cancer Care Team from Froedert Hospital in Milwaukee, had her start chemotherapy by pill, and after 3 cycles, there was 50% reduction in the tumors on both liver and pancreas. Now after 3 more cycles, there has been more reduction around 20%, with the plan to continue the chemotherapy until there is no more reduction, as she has been able to tolerate the pill version of chemothearapy well enough to continue part-time work through it all. At that point the plan will be to remove the mass on the pancreas, and reevaluate next steps. The cancer care team has repeatingly mentioned that they believe they can kick this down to a maintenance issue decades down the trail, answering our prayers for a promising diagnosis long term. NET's as we read is in only about 2% of the cases, and consider this a true blessing to allow her a fair fight to at least knock this down to allow for her to live a full life. Stay strong, there will still be good and bad days, but you will make it.