Learn About NETs

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 15, 2021

There are many opportunities to learn more about this very elusive and hard-to-diagnose disorder called Neuroendocrine Tumors (NETs)/Carcinoids. When a new learning opportunity becomes available it will be posted here.

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

Thursday, November 18, from 12 noon until 1 p.m. EST. Dr. Chandrasekharan, an oncologist from the University of Iowa, will be speaking at a FaceBook Live Meeting. Information on how to join this meeting is provided in the link below.
https://www.carcinoid.org/2021/11/14/dr-chandrikha-chandrasekharan-to-be-featured-guest-for-ccfs-luncheon-with-the-experts/
As you read the link you will see that there are opportunities to submit questions.

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On Thursday, December 9, the Carcinoid Cancer Foundation, will be hosting a Facebook Live program with Dr. Dasari. Dr. Dasari has a clinical focus on neuroendocrine cancer and he currently serves as Co-Chair of the MD Anderson multidisciplinary neuroendocrine tumor board.

There will be a time to post questions during this Facebook Live webinar. If you are interested in attending, click on this link,
https://www.carcinoid.org/2021/12/05/dr-n-arvind-dasari-to-be-featured-guest-for-ccfs-luncheon-with-the-experts/

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@hopeful33250

On Thursday, December 9, the Carcinoid Cancer Foundation, will be hosting a Facebook Live program with Dr. Dasari. Dr. Dasari has a clinical focus on neuroendocrine cancer and he currently serves as Co-Chair of the MD Anderson multidisciplinary neuroendocrine tumor board.

There will be a time to post questions during this Facebook Live webinar. If you are interested in attending, click on this link,
https://www.carcinoid.org/2021/12/05/dr-n-arvind-dasari-to-be-featured-guest-for-ccfs-luncheon-with-the-experts/

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Either the date is wrong or the day.

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@mfgw

Either the date is wrong or the day.

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Hello @mfgw,

I appreciate your correction to the date. I also see that this is your first post on Mayo Clinic Connect, welcome!

I would be interested in knowing something about your interest in Carcinoid Cancer. Have you or a family member recently had this diagnosis?

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Good Afternoon,
I personally have been diagnosed with cancer. I have carcinoid and NETs, Stage 2. I start Octreotide tomorrow. My care team are all a part of University Health and UT Health in San Antonio, TX.

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@mfgw

Good Afternoon,
I personally have been diagnosed with cancer. I have carcinoid and NETs, Stage 2. I start Octreotide tomorrow. My care team are all a part of University Health and UT Health in San Antonio, TX.

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Hsllo @mfgw

This Facebook Live event should be helpful to you. If you are comfortable sharing more, is this a new diagnosis for you or have you previously had carcinoids?

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@hopeful33250

Hsllo @mfgw

This Facebook Live event should be helpful to you. If you are comfortable sharing more, is this a new diagnosis for you or have you previously had carcinoids?

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My first carcinoid was diagnosed in 2016. However, my first growth was removed in 1994, then again in 2008. I had 4 NETS removed this year, and another stage 2 taking up residence in my duodenum. There is the potential there is still something hiding in my stomach. Those contrasts like to show and tell. My 2 Chromogranin A's have been 4388, and the last taken was last week and it was 5525.

So the thought that I have NETs are scary. The cancer that keeps on giving.

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@mfgw

My first carcinoid was diagnosed in 2016. However, my first growth was removed in 1994, then again in 2008. I had 4 NETS removed this year, and another stage 2 taking up residence in my duodenum. There is the potential there is still something hiding in my stomach. Those contrasts like to show and tell. My 2 Chromogranin A's have been 4388, and the last taken was last week and it was 5525.

So the thought that I have NETs are scary. The cancer that keeps on giving.

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I am sorry to hear of your history of NETs, @mfgw. You mentioned you are starting Octreotide. Are these injections to control carcinoid syndrome?

I have had a history of carcinoids as well. They have all been in the duodenum bulb. My surgeries were in 2003, 2005, and again in 2016. I understand what you mean when you say it is scary.

Have you had the Gallium Pet Scan?

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Yes. My 2008 surgery was to remove 2 tumors in my duodenum. So, this is my second round in the duodenum. I have had the PET plus many others. This drug hopefully will stop NETS from continuing to grow and travel, also maybe stop new ones. Or, at least that is the thought.

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NETs are not curable, just just have to stay on top of any old and new growths.

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@mfgw

NETs are not curable, just just have to stay on top of any old and new growths.

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@mfgw, you are right. Staying on top of new growths is important. Do you have upper endoscopies on a regular basis?

My last surgery in the duodenal bulb was done using endoscopy equipment. It was an outpatient procedure. Much better than the first two surgeries which were invasive and required nearly a week's hospital stay.

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@hopeful33250

@mfgw, you are right. Staying on top of new growths is important. Do you have upper endoscopies on a regular basis?

My last surgery in the duodenal bulb was done using endoscopy equipment. It was an outpatient procedure. Much better than the first two surgeries which were invasive and required nearly a week's hospital stay.

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My duodenum surgery was major in 2008. I am scheduled for an advanced EDG. The plans are to take a piece for pathology. It cannot safely be removed without perforating. I am hoping the drug I am starting will stop the tumor from spreading or multiplying.

How are you doing?

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