1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Posted by ahilker @ahilker, May 24, 2023

Hi everyone. I am new to the group and wondered what kinds of symptoms others with Pnet go through. I was diagnosed just under a year ago and began the lanreotide infusion shot this past October. I went into my regular doctor last May for what I thought was a gall bladder infection. My doctor sent me in for a full abdomen CT and found a 3 cm mass on the tail of the pancreas. At the time my doctor told me we need to look at the mass first before looking into the gall bladder. After several PT scans and biopsies they can see small tumors covering my entire liver the largest being 1.1 cm. Since surgery was not an option, I started on the infusion. My nausea did not go away so I went back in to see about my gall bladder. Since then I feel 25 times worse. I’m exhausted all the time, very little appetite but no real weight loss, depression from having to rely on my family and pain around the pancreas and liver. I am grade 2 well functioning stage 4. Any suggestions would be greatly appreciated

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

splendrous | @splendrous | Oct 23 6:06pm
In reply to @hopeful33250 "Helle @splendrous This question about how you should take this test would be best answered by..." + (show)
@hopeful33250

Helle @splendrous

This question about how you should take this test would be best answered by the medical provider who is requesting the 5-HIAA. I have taken this test several times and I've never received instructions on dietary restrictions. However, like you, I have read about these restrictions from other sources. As I'm not a Mayo patient, I would check with your provider to be certain.

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Teresa, is there a place where I can see my replies to others. I am looking for a conversation I had in Sept I think.

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 24 10:13am
In reply to @splendrous "Teresa, is there a place where I can see my replies to others. I am looking..." + (show)
@splendrous

Teresa, is there a place where I can see my replies to others. I am looking for a conversation I had in Sept I think.

Jump to this post

If you want to view your replies to others, just go to your profile. If you click on your name above (in blue with the "@" in front of it), that will take you to your profile page. When you get to your profile page you will see in the margin, "Comments." Click on Comments and it will bring up every reply/comment that you have posted since you joined Connect.

Let me know if you have any other questions.

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 31 7:28pm

NETs Support Group Meeting, Thursday, November 7th, from 5:30pm-7:00pm EST

Guest Speaker: Dr. Susanne Warner, Hepatobiliary and Pancreas Surgeon
Mayo Clinic Rochester

The Role of Surgery in Patients with NETs
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting.

For Questions or Concerns please call 904-953-7266

After the speaker leaves the meeting, there is time for the members of the group to share and to ask questions.

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