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I have recently been diagnosed with my third neuroendocrine tumor
Neuroendocrine Tumors (NETs) | Last Active: Feb 12, 2017 | Replies (38)Comment receiving replies
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.
Replies to "I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and..."
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! <br><br>
Also check with acor.org.<br>Association for cancer online resource<br><br>
Never said my family was not supportive.<br><br>
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Sorry I registered but can not login. I am on Octreotide LAR 30mg<br><br>