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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver
Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)Comment receiving replies
Hello all! New to the group. Diagnosed with PNET that have metastasized to liver, bone, lung. Had symptoms for years but no one could find out what was going on. I had a bout of pancreatitis in December and my gallbladder was removed at that time. Scans revealed something on the pancreas. Long story short, stage 4. Grade 2 well differentiated tumors Started lanreotide two weeks ago. I have been experiencing bloating, low heart rate, wheezing and some swollen tongue issues which my doctor does not feel are related. Has anyone else had these symptoms? I also have experienced some insomnia and tumor area pain. Anyone else?
Thank you!
Replies to "Hello all! New to the group. Diagnosed with PNET that have metastasized to liver, bone, lung...."
Hello carm1011! I have the same diagnosis - pNET well functioning, Grade 2, Stage 4 with liver metastases. I had 4 Lanreotide injections. Similar symptoms - bloating, gas, loose stools, low heart rate. After 2-3 mo on Lan symptoms are not so bad. I get them more severeon day 1-4 after injection. It gets better! I do not have a swollen tongue, but have some sores in my mouth, and my hair started falling off. I had surgery on Feb.1, 2023. ( distal pancreatectomy, with spleen and gall bladder removal as well as hysterectomy). My tumor was very large ( 10×16×22 cm).Be strong! You got this!💜🦓
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Hello @carm1011 and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. Many on this forum have had similar experiences to yours with a late diagnosis of NETs after years of symptoms and many of us have had no symptoms at all, our NETs were found incidentally.
You mentioned swelling. You might find the following discussion helpful. Here is the link:
--Swelling with Liver Metastasis
https://connect.mayoclinic.org/discussion/swelling-with-liver-metastases/
Has there been any mention of surgery and/or liver embolization to treat your NETs? Are you currently seeing a NETs specialist? If not, I would highly recommend at least one consultation with a NETs specialist. Mayo Clinic has NET specialists at all three of their locations. If you would like a consultation with a Mayo NET specialist, here is a link with information to schedule an appointment, http://mayocl.in/1mtmR63
If a Mayo appointment is not possible, here is a world-wide listing of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I am sure that others in this pNET discussion will post with you soon and share their experiences. In the meantime, you mentioned tumor-area pain. Is this related to the bone pain or to the liver/pancreas?