1. < Neuroendocrine Tumors (NETs)
Mentor

I have recently been diagnosed with my third neuroendocrine tumor

Posted by Teresa, Volunteer Mentor @hopeful33250, Mar 28, 2016

I have recently been diagnosed with my third neuroendocrine tumor. Has anyone else had experience in being treated for this rare type of tumor?

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

gulzar | @gulzar | Oct 31, 2016

I have neuroendocrine primary in midgut and mets to liver about 20 small tumors, the primary detected on octreoscan but liver mets did not since they are not somatostatin receptors I can't get PRRT treatment nor somatostatin.

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gulzar | @gulzar | Oct 31, 2016
In reply to @hopeful33250 "By the way, I just realized that I failed to mention that all three of these..." + (show)
@hopeful33250

By the way, I just realized that I failed to mention that all three of these tumors have been located in the duodenal bulb. The first was .9 cm, in 2003; the second was .3 cm in 2005 and this one is 1 cm.

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what is Ki67 percentage of it if they had the biopsy.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 1, 2016

@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this point that concern you? Could you explain what PRRT treatment is? Best wishes.

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3 replies
gulzar | @gulzar | Nov 1, 2016
In reply to @hopeful33250 "@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this..." + (show)
@hopeful33250

@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this point that concern you? Could you explain what PRRT treatment is? Best wishes.

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http://prrtinfo.org/prrt
Peptide Receptor Radionuclide Therapy (PRRT)
about PRRT one of the best known treatment for neuroendocrine cancer.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2016
In reply to @hopeful33250 "@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this..." + (show)
@hopeful33250

@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this point that concern you? Could you explain what PRRT treatment is? Best wishes.

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@gulzar I looked at the website and I'm assuming that it is performed like radiation therapy?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2017
In reply to @hopeful33250 "@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this..." + (show)
@hopeful33250

@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this point that concern you? Could you explain what PRRT treatment is? Best wishes.

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@gulzar How are you doing? It's been a while since you have posted. Please check in with us and let us know how you are feeling. Teresa

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gulzar | @gulzar | Feb 11, 2017
In reply to @hopeful33250 "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..." + (show)
@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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Hi Teresa It has been long time last time I wrote about ppi I am now trying to quit gradually and I am now taking one pill every 3 days when I try to move to 4th I experience diarrhea but have no problem with acid would like to know how you quit the ppi. I found a few articles it say ppi to pylori Bactria are the cause of gastronome. I wish someone do a survey at support sides for those who has gastronome.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 12, 2017
In reply to @hopeful33250 "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..." + (show)
@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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Hi @gulzar: I did not have gastronome but the carcinoid cancer issue, so my situation may be different that yours, however, I simply switched to a non-PPI med. I take Zantac now. Also, Pepcid is a non-PPI med that can be used. Perhaps your doctor could help you make the switch to a med that you would be more comfortable with. Please check with him/her. Teresa

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hunts1014 | @hunts1014 | Feb 1 5:23pm
In reply to @hopeful33250 "By the way, I just realized that I failed to mention that all three of these..." + (show)
@hopeful33250

By the way, I just realized that I failed to mention that all three of these tumors have been located in the duodenal bulb. The first was .9 cm, in 2003; the second was .3 cm in 2005 and this one is 1 cm.

Jump to this post

I read your story and pray you are doing well. How are you? How was yours removed?

My husband was diagnosed with this in Oct. 2024 and was removed during a routine Endoscopy. We have seen a local gastroenterologist, oncologist and both were not familiar with this tumor in this location therefore I went to MD Anderson in Houston TX. Unfortunately, I’m told there is nothing to do to prevent recurrence other than monitoring with an Endoscopy every 6 months for 3 years and then annually after that for rest of my life. Mine was a grade 1 well differentiated 7 mm tumor.
How were you monitoring your cancer when more tumors were found? Any insight you can share would be very appreciated?

How do you rate the care at Mayo Clinic as we were not thrilled with MD Anderson as we felt like a number there since my husband didn’t have an active tumor. We were told similarly to you in that they considered him cured but we are concerned about recurrence as we have read a lot about people having additional nets in their duodenum bulb after complete resection.

Thanks,
Kim

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9 8:18pm
In reply to @hunts1014 "I read your story and pray you are doing well. How are you? How was yours..." + (show)
@hunts1014

I read your story and pray you are doing well. How are you? How was yours removed?

My husband was diagnosed with this in Oct. 2024 and was removed during a routine Endoscopy. We have seen a local gastroenterologist, oncologist and both were not familiar with this tumor in this location therefore I went to MD Anderson in Houston TX. Unfortunately, I’m told there is nothing to do to prevent recurrence other than monitoring with an Endoscopy every 6 months for 3 years and then annually after that for rest of my life. Mine was a grade 1 well differentiated 7 mm tumor.
How were you monitoring your cancer when more tumors were found? Any insight you can share would be very appreciated?

How do you rate the care at Mayo Clinic as we were not thrilled with MD Anderson as we felt like a number there since my husband didn’t have an active tumor. We were told similarly to you in that they considered him cured but we are concerned about recurrence as we have read a lot about people having additional nets in their duodenum bulb after complete resection.

Thanks,
Kim

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@hunts1014, welcome. I'm tagging @hopeful33250 to make sure that she sees your questions.

I understand your concern about recurrence. If you would like to submit a second opinion at Mayo Clinic, you can request one starting here: http://mayocl.in/1mtmR63

Several GI NETs members here are Mayo patients, like @vanhauen @vinnie694 @markbrinkley and others who can share their experiences.

Hunts1014, which Mayo Clinic location were you considering?

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