Colleen Young, Connect Director | @colleenyoung | 1 day ago
@klewis10367, to help me connect you with others, can you please confirm? Do you have low-grade appendiceal mucinous neoplasm (LAMN), a rare tumor of the appendix?
I am glad to hear that you are being seen at Mayo and that you will have an MRI and a DOTATATE scan. This will certainly help your medical team to better understand what is going on. Have you had any other tests such as the 24-hour urine test (5-HIAA) or serotonin blood work?
I am sure you are looking forward to some resolution and getting a correct diagnosis. What symptoms were you having that led to these tests?
I am glad to hear that you are being seen at Mayo and that you will have an MRI and a DOTATATE scan. This will certainly help your medical team to better understand what is going on. Have you had any other tests such as the 24-hour urine test (5-HIAA) or serotonin blood work?
I am sure you are looking forward to some resolution and getting a correct diagnosis. What symptoms were you having that led to these tests?
@hopeful33250 From the Visit notes that should all be done that same day on Thursday. Had Diarhea and right side pain for years but always thought was something else GI related but could never diagnose...found this by luck on a CT Scan meant for something else. During that time though the cancer finally reared its ugly head and kinked my Sigmoid colon and narrowed my small intestine causing extreme spasms and gurgling. That led to were i am at now.
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@klewis10367, to help me connect you with others, can you please confirm? Do you have low-grade appendiceal mucinous neoplasm (LAMN), a rare tumor of the appendix?
No. The Dr is classifying it as as a GINet as of now. I'm not sure if the upcoming MRI and DOTATATE scan will change that diagnosis.
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1 ReactionHello @klewis10367
I am glad to hear that you are being seen at Mayo and that you will have an MRI and a DOTATATE scan. This will certainly help your medical team to better understand what is going on. Have you had any other tests such as the 24-hour urine test (5-HIAA) or serotonin blood work?
I am sure you are looking forward to some resolution and getting a correct diagnosis. What symptoms were you having that led to these tests?
@hopeful33250 From the Visit notes that should all be done that same day on Thursday. Had Diarhea and right side pain for years but always thought was something else GI related but could never diagnose...found this by luck on a CT Scan meant for something else. During that time though the cancer finally reared its ugly head and kinked my Sigmoid colon and narrowed my small intestine causing extreme spasms and gurgling. That led to were i am at now.