Welcome to the NETs Group! Come say hi.

Hi everyone,
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my mail lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact me.
Praying for all cancer patients. 🙏🏻

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable. Am going to have SBRT radiation as recommended by my cancer team. Has anyone had this?

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

@judylong, I wanted to check in with you. Did you decide to get a second opinion? What is your treatment plan?

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.

Hi,
59 yr diagnosed with Pheochromocytoma or paraganglioma. The doctors are trying to find somewhere that does an MIBG scan, so they can see where it is located.
Adrenal glands where clear on CT scan.
Not much information on metastasis I guess it’s a wait and see. I’m bit nervous.
After reading about others on here I feel fortunate at this time. Sending all my prayers and positive energy to all of you.

I was wondering if anyone has had this tumor and what was that like in the treatment of it.

Thank you

I just got the pathology results --Neuroendocrine tumer- NET/G1/Typical Carcinoid. I had a 9 mm left upper lobe pulmonary nodule discovered through previous test six months ago. Petscan showed no abnormal activity. I will be seeing my oncologist on Tuesday--- I have researched many options for treatment -- I am seriously considering finding a doctor who is more specialized since all information seems to indicate that this is a rare cancer. Any opinions?