New to the group and cancer journey: Liver NETs

Posted by mamajeanne @mamajeanne, May 6 5:24pm

I was recently diagnosed with stage 4 neuroendocrine tumors on my liver.
I went to the Dr. for abdominal pain and after cat scans and a liver biospy it was discovered.

I started the shot Lanreotide on April 24th. We are hoping this slows the growth of the tumors.
I had some fatigue for a few days after the shot.

I now will received the shot every 28 days for the rest of my life. Praying and hoping this works.
They say 3-6 months for some results.

Just wanted to share my journey and see if anyone else going through this.
FYI I am a 67 year old female and am a regular dr. check up person. Was very surprised by this diagnosis as my ALT and AST in blood work were always normal. My Chromogranin panel was very elevated. 8700 to be exact. Boy am I learning alot.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | May 6 9:06pm

Hello @mamajeanne and welcome to Mayo Connect. I am glad that you found this forum, as we have many members with NETs in the liver, and I'm sure you will find support and encouragement here. Here are some discussions with members who have liver NETs:

--Liver mets treatment options for carcinoid NET:
https://connect.mayoclinic.org/discussion/liver-mets-treatment-options-for-carcinoid-net/
--Liver masses found on CT scan:
https://connect.mayoclinic.org/discussion/liver-masses-found-on-ct-scan/
How are you feeling now? Are you still having abdominal pain?

fraaseo | @fraaseo | May 7 8:27am

I would ask the Dr to schedule a dotatate Pet scan to search for a primary NET site. Most common areas are small intestine, pancreas, lungs, rectum or appendix. Primary liver tumors are rare. Definitely make sure you are seeing a Net Specialist Dr that is familiar with NETS cancer. Good luck to you!

lindabees | @lindabees | May 7 8:43am

I'm sorry you have to go through this but I'm glad you found Mayo Connect. There's many here who are happy to share their experiences and help with any questions you may have.
I agree with the recommendation to get a dotatate ga-68 scan. This is a type of pet scan that is specific to spot nets anywhere in the body as long as they have the receptors, which most do.
I would also recommend that you educate yourself as much as possible about this disease. It is a rarenform of cancer in which most general oncologists may not have the required knowledge to properly treat. If possible, its best to see a net specialist to ensure that ypu receive not only the proper treatment but the proper sequencing of those treatments. You can find a specialist and also educate yourself at
https://netrf.org/for-patients/newly-diagnosed/

mamajeanne | @mamajeanne | May 7 11:06am

I did have a Pet Scan after met with oncologist. Another one scheduled this summer

Turkey, Volunteer Mentor | @tomrennie | May 8 8:51am

In reply to @mamajeanne "I did have a Pet Scan after met with oncologist. Another one scheduled this summer" + (show)

@mamajeanne I have a primary pancreatic NET with liver metastasis. Other than the abdominal pain, did you have any other symptoms prior to your diagnosis?