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

That report my say metastatic to liver because I've read that neuroendocrine doesn't typically originate in the liver? They may now go back and review that scan from 2 years ago and see something now. In my case a CT was reviewed from 5 years back and Mesentery mass was there then, just not detected by the person analyzing the CT back then.

The biopsy should be able to tell you more about the characteristics of your Nets. Then rate of growth might be more determined. (IE: well differentiated or not)

@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?

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.

There should be a ki-67 score on your biopsy report. This measures how fast your cancer cells are dividing.

Thanks for your reply. KI-67 is 6-8 and cells are differentiated.

Missed that from your original post. My bad. Hence your Grade 2. I am as well. I am at 8%. That is slow growing.

Ki-67 index of 2% or lower

A Ki-67 index of 2% or lower means that fewer than 2 in every 100 cells (2%) are dividing. This is a grade 1 NET (WD NET G1).

Ki-67 index between 3% and 20%

This means that between 3 and 20 cells in every 100 cells (3% and 20%) are dividing. This is a grade 2 NET (WD NET G2).

Ki-67 index higher than 20%

A Ki-67 index of more than 20% means that more than 2 in every 10 cells (20%) are dividing. This is either a grade 3 NET (WD NET G3) or a neuroendocrine carcinoma (PD NEC G3).

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?

Thanks for your comment. I have since learned that non functioning (no symptom) tumors do not become functioning tumors with symptoms but they can change grades over time. I have also learned that since Dodotate only lit up in the liver than assumption is that the origin is very small cell in the GI track. If origin was in the Pancreas it would have lit up. Since treatment is the same for metastatic neuroendocrine tumors in the liver as neuroendocrine tumors in the GI Track Dr view is there no reason to pursue the origin. If it was in the pancreas there is a different treatment so that is important to know. I have had two recommendations for treatment. One Net Specialist says monitor with scans until growth is seen in the tumor. Another Net Specialist says to start Octreotide shots now.

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?

In reply to your questions, I had breast cancer 9 years ago, so periodically have scans to see if the disease has reappeared. A mass was seen in the liver from the scan and a biopsy was done identifying it as a metastatic neuroendocrine tumor not breast cancer. Thus began a series of additional tests including the Dodotate Pet CT to identify the origin. I have several tumors in the liver along with the mass. Since my tumor is not functioning and not producing hormones, I have no symptoms. So only reason it was identified was due to follow up from previous cancer. I am 77 years old. I assume that you were started on your treatment when your tumor was identified approx 2 years ago. Where is the doctor that is treating you? Have you seen any growth in your tumors? Is the expectation that you will continue with the current treatment indefinitely? I have given questions to my doctor to ask Mayo Clinic doctor how much growth would be a trigger to start treatment and the pro and con of watchful waiting vs starting treatment. A doctor that is a NETS specialist recently arrived in Atlanta that was working at MD Anderson and he recommended that I start octreotide now due to the grade 2 and KI-67 index of 6-8%. My breast cancer oncologist is reviewing my case with the Tumor Board this week and I suspect they will agree with the recommendation of starting treatment now. The MD Anderson doctor said he would consider surgical exploration if stable disease is observed for 6-12 months on therapy.