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← Return to Dotatate lights only in liver, but report says metastatic to liver?
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Dotatate lights only in liver, but report says metastatic to liver?
Neuroendocrine Tumors (NETs) | Last Active: Nov 4 1:25pm | Replies (12)Comment receiving replies
@splendrous, I hope you saw the helpful post from @jlsgt.
Sometimes the original source, also known as primary tumor, is not found. The general term is Cancer of Unknown Primary (CUP). It sounds like the testing to date was able to determine that the liver tumor is neuroendocrine, but not a primary liver tumor.
Have you had further testing in the meantime? What more have you learned? Has a treatment plan been recommended?
Replies to "@splendrous, I hope you saw the helpful post from @jlsgt. Sometimes the original source, also known..."
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Thanks very much for your reply. I have been waiting for the Mayo Clinic E-Consult so I would have some information to share with you.
Since I wrote my biopsy was reread by two additional people and the finding was changed to metastatic neuroendocrine tumor in the liver not carcinoma. Grade 2 Stage 4. They did not recommend doing any further test to identify the origin. My Dodo scan only had the tumor in the liver light up. All my other tests were normal.
They view the origin is probably in the small intestines and do not recommend any additional test to confirm since I do not have any symptoms. I have read that they often do not locate an origin for metastatic neuroendocrine in the liver.
Since I have no symptoms they are not recommending any treatment. They recommend regular 3 month scans. For something that is slow growing that seems very often to me.
I now have a Mayo Clinic diagnosis and recommendation. I am wondering if I should make an in person visit to MD Anderson. Not sure how different their view would be. I am going to see about sending some follow up questions to Mayo.
I would like to know their experience with a diagnosis like mine. Do people eventually develop symptoms? Is mine slow growing? When do they consider surgery for the liver tumor? Mine is 4 x 3 cm.