Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.
Jump to this post
Thankyou for your update. I hope to go 10 years without surgery because my NET which is on the head of the Pancreas is non functional at this time.
Hello 👋🏻 @hopeful33250 CA 19.9 progressively getting higher and symptoms and imaging findings are more… what should I’ll be looking forward to? I’m really sick…
Any feedback would be greatly appreciated 🙏🏻 blessings of healing for everyone 🌼❤️🩹🤲🏻
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.
Your experience of an "incidental finding" is so common among us NET patients. My diagnosis was the same. No symptoms, but a routine EGD for GERD/hiatal hernia revealed the first NET in the duodenal bulb. Since the first surgery, I've had two more surgeries. My surgeries were in 2003, 2005 and 2016.
I look forward to hearing from you again. I hope you will update me with any findings from your PET scan today. Will you let me know of any questions you have as you walk this NETs journey?
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.
Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4. It has been a while since I have heard from you. Let’s pull up in a circle and check in with each other. Do any of you have any special concerns that you would like to share? What about any new treatments or test results? The issue of Neuroendocrine tumors had a lot of publicity in February. If you learned something new that you would like to share, let’s do that as well. I’m looking forward to hearing from you. Teresa
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.
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?
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In