1. < Neuroendocrine Tumors (NETs)

My Husband was newly diagnosed with Carcinoid Cancer

Posted by heidilynn4 @heidilynn4, Feb 13, 2017

My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were found), appendix (no carcinoid per the pathology report) and a 5cm carcinoid tumor in the mesentery. They also removed 23 lymph nodes, but only 2 had carcinoid per the pathology report. His surgeon at Mayo did not see any carcinoid spots on his liver per the CT scan, so they are not starting him on octreotide, etc.
They also said that the margins were good on the pathology report, so they don't think he has widespread disease.
The only follow up right now is a CT scan and chest xray on May 1st, which is 3 months after his surgery. Should I push to have an Octreoscan or a GA-68? No appointment with an Oncologist has been scheduled either. Does anyone have a name of an Oncologist at Mayo who specializes in Carcinoid?
Has anyone else had surgery only with no treatment and had the Carcinoid not come back? Nervous about not doing the Sandostatin in case there are smaller tumors that aren't showing up on the CT scans.
Thanks for your help!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 28, 2017

@tomewilson Thanks. Your "primer" provides a lot of good information. Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 28, 2017

@tomewilson As I read through the "Primer" that you provided I was most interested in the "Foods to Avoid." I'm not familiar with that. Could you provide a link for that information? Teresa

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gaylejean | @gaylejean | May 31, 2017
In reply to @jenchaney727 "@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually..." + (show)
@jenchaney727

@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually these symptoms that prompted me to get MANY tests that ultimately found my first tumor in my Ilium colon. I was having SEVERE watery diarrhea. I had always had IBS my entire life, but this was different. All blood and fecal tests and scans negative, so demanded the colonoscopy where they luckily found the little guy hiding. Carcinoid syndrome is different for everyone. Right now, I'm not having so much of the watery diarrhea, but am having severe flushing episodes where my chest and face/ears turn red and I have dry heat (no sweating). Foods and emotions mainly trigger it for me, and I had a very bad scare at dental office few weeks ago where they gave me novacaine with Epinephrine in it. It sent my blood pressure through the roof, very red flushing and literally thought I was having a heart attack. This is known as Carcinoid Crisis, which I was NOT aware of until speaking with my doctor last week. Turns out Epinephrine is VERY bad for Carcinoid patients as it has contraindications to usual patients. Say NO EPI when docs ask what drugs you are allergic to!

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I asked my oncologist about the NO EPI and if it should be on my medical record. He said if it was a matter of life and death you would WANT to get epi. Then they would just administer the octreotide afterwards.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 31, 2017
In reply to @jenchaney727 "@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually..." + (show)
@jenchaney727

@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually these symptoms that prompted me to get MANY tests that ultimately found my first tumor in my Ilium colon. I was having SEVERE watery diarrhea. I had always had IBS my entire life, but this was different. All blood and fecal tests and scans negative, so demanded the colonoscopy where they luckily found the little guy hiding. Carcinoid syndrome is different for everyone. Right now, I'm not having so much of the watery diarrhea, but am having severe flushing episodes where my chest and face/ears turn red and I have dry heat (no sweating). Foods and emotions mainly trigger it for me, and I had a very bad scare at dental office few weeks ago where they gave me novacaine with Epinephrine in it. It sent my blood pressure through the roof, very red flushing and literally thought I was having a heart attack. This is known as Carcinoid Crisis, which I was NOT aware of until speaking with my doctor last week. Turns out Epinephrine is VERY bad for Carcinoid patients as it has contraindications to usual patients. Say NO EPI when docs ask what drugs you are allergic to!

Jump to this post

@gaylejean That is an interesting approach, thanks for sharing your doctor's opinion. It might still be wise to have a medic alert bracelet with information about the need for the Octreotride if EPI is administered. Has anyone else discussed this with their doctor? @amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson If so, share any information that you feel would be helpful. Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 14, 2017

Hello @heidilynn4

As it's been awhile since we've heard from you, I wanted to check in and see how your husband is feeling. Are you feeling comfortable with his progress?

Teresa

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