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?

 Kay:  I’m always amazed at the tremendous strength in people who deal with chronic illness.  You are one of those heroes!

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@kelseydm

Hi @hopeful33250! Welcome to Connect. I’m so sorry to hear about your diagnosis. I’m sure that is scary. What has your doctor recommended in terms of treatment? I’m tagging @lucci50, @bunnypawm, @irvkay312, @trouble, @upblueeyes, @michellecaforiaymailcom and @jimdc who have all dealt with various types of neuroendocrine tumors and may be able to provide some support and insight.

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Treatment with prrt or octreotide

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@kelseydm

Hi @hopeful33250! Welcome to Connect. I’m so sorry to hear about your diagnosis. I’m sure that is scary. What has your doctor recommended in terms of treatment? I’m tagging @lucci50, @bunnypawm, @irvkay312, @trouble, @upblueeyes, @michellecaforiaymailcom and @jimdc who have all dealt with various types of neuroendocrine tumors and may be able to provide some support and insight.

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Hi,

Sorry to hear about your diagnosis. One thing doctors and research have
shown is that most neuroendicrine tumors tend to be slower growing than
many other types. After my last Octreotide Scan (Nov. 2015) we saw a 2.6
cm grwth mestasized from Islet Cell (of pancreas) to liver, with 2 other
uptake area’s that likely will grow. It also showed uptake to Spleen, GI
and GU tracts. In essence, my Oncologist said it best “when it gets to
your liver, it gets into your blood and you have to watch for changes from
there on.

CBC and other blood panel changes, tumor marker growth or decline, and your
systematic changes can help understand matter more thoroughly.

Kay

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I am interested in trading experiences and information with anyone who has neuroendocrine carcinoid tumors.

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I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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@gaylejean

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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Sorry I registered but can not login. I am on Octreotide LAR 30mg

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@gaylejean

I am interested in trading experiences and information with anyone who has neuroendocrine carcinoid tumors.

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Hi, I was recently diagnosed with neoendocrine tumors and autoimmune gastritis. So far I was told to do nothing at present since the tumor was nonmiotic. What did they do for you? I would prefer the tumors be removed. Loretta

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@gaylejean

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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Gaylejean:  The OctreoScan is a two day scan that specifically looks for carcinoids. The first day you have a radioactive injection and then later in the day you go back for a series of scans, and then the second day you go back in the afternoon for some more scans.  Here is a website that will put you in touch with support groups in the U.S. http://www.carcinoid.org/resources/support-groups/directory/.  Even though you might not be able to get to a meeting you might find some personal support through email or phone calls.  I have found that people with carcinoids are very helpful, thoughtful, people who understand what it is like to have something that no one else understands.   I’m sorry to hear that your family is not supportive of you at this time, sometimes we need to find our own support family in other places.  Keep in touch!

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@gaylejean

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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Also check with acor.org.
Association for cancer online resource

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@gaylejean

I am interested in trading experiences and information with anyone who has neuroendocrine carcinoid tumors.

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Welcome @gaylejean and @lorettanebraska.
I moved your messages to this thread so you can meet others with neuendocrine tumors. So glad you found us on Connect.

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@gaylejean

I am interested in trading experiences and information with anyone who has neuroendocrine carcinoid tumors.

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I don’t know if I have autoimmune gastritis. And I don’t understand the
term nonmitotic – means not comparable – to what? Means you don’t have
other tumors to compare it to?????
Since my diagnosis, I have seen four specialists – all of them recommended
the wait and watch approach. It drives you crazy because you read about
having surgery early to remove the tumor before it spreads. I was diagnosed
in 2002 and asked for surgery in 2008. It was too late to do any good
because of the metastasis but it was good I had surgery – saved me from
dying from “blue bowel”.

Liked by lorettanebraska

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@gaylejean

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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Never said my family was not supportive.

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My apologies, it must have been someone else.

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@colleenyoung I would like to thank you for great service to the patients and caregiver, I have contact with a few more support group and I spend so much time to learn from others. Since I have so much to do I am only interested in Neuroendocrine cancer issues and stop receiving other type health issues. I appreciate your help in this manner.

Thanks,
Ozzie

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Thank you @gulzar,
You can set your notification settings to receive only messages from the discussion about neuroendocrine cancer issues by going into your account settings https://connect.mayoclinic.org/account, scroll to the bottom and tick the box that says ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.

Since joining Connect, you have posted messages in a variety of discussions on different issues. See your history here: https://connect.mayoclinic.org/members/97348aa005c9f85f04edad6049fe0b4fe69188151/ This means that every time a new message is posted to these discussions you receive an email notice, which can be overwhelming. To stop receiving email notices to the unwanted topics, simply click “Unsubscribe from this discussion thread.” at the bottom of the email.

I hope this helps.
I would also like to let you know that at the end of November, we will be opening a new group dedicated to neuroendocrine tumors.

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