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Lost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
@firepowr if you don’t mind me asking, what have they said about yours that is considered aggressive? The Ki-67%? Well differentiated or not?
The approach they have with the chemo is treating it as a small cell lung cancer- even though the lungs are clear. I’m assuming it’s due to the cells that are expressed and how rapid growing they are?
Apparently G3(well differentiated- Ki-67: 70%)NETs originating in the small intestine and Mets to liver is even more rare and no “standard of treatment” found.
Feeling pretty defeated with the prognosis of less than 2years since study’s are limited. This forum gives a little hope to make it past that but have yet to read about situations as aggressive as this one
Replies to "@firepowr if you don’t mind me asking, what have they said about yours that is considered..."
To be honest, that’s just what the oncologists at Mayo said at the beginning. My Ki-67 numbers are variable from my biopsied tumor sites—I have tumors that are within all levels—grades 1, 2, and 3–so they are treating me according to the most aggressive grade 3 lesions. I was told I had the “best behaving” grade 3 because my tumors are well-differentiated. I hope this makes sense!
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My understanding is a grade 3 of the lung is considered small cell or non small cell and should be treated as such; however in addition lectures from UK hospital net specialists said that can have two types at once regular net as well. Really need an expert to assist with proper diagnosis and treatment if they are two kinds. Of course not a doctor but in studying my own lung to liver net that appears to be a growing concensus. Take hope that if you can get the high grade treated you may also benefit from simultaneous if possible for the net in small intestine and liver. Liver mets are very common in neuroendocrine disease. So important to find the right specialists for this issue they call it heterogenous. Best wishes to you in keeping up your spirits. According to lectures on thr NETRF site they call neuroendocrine the upside down cancer as the primary is often small but mets can be large. So if your lung issue is a small grade 3 perhaps could be treated with truebeam radiation which is used in treating high grade. tumours in lung. Best of luck in this journey.