← Return to Dotatate lights only in liver, but report says metastatic to liver?

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@splendrous

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.

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Replies to "Thanks very much for your reply. I have been waiting for the Mayo Clinic E-Consult so..."

Hello @splendrous,

I appreciate your update. It sounds like you are still considering another opinion to make sure you are getting the appropriate treatment.

Your question as to the development of symptoms is certainly difficult to answer as each person's journey with NETs is different. It sounds as if the frequent scans that are being suggested are the doctor's way of checking to be sure that this does not develop any quicker than is expected. Is that your understanding as well?

I'm am 56yrs old with liver NETs metastatic as well. Ki-67 is 4, well differentiated as well. I just completed my 23 Somatuline (Lanreotide) injection. And will have my 7th quartly MRI tomorrow. I'm also curious what Mayo tells you. Why no treatment to slow the growth? How old are you? Why did you do a Pet scan if you had zero symptoms?