NET on liver: Question about treatments when no symptoms

I totally understand the desire for a conservative approach. While there is likely a primary somewhere, it apparently can’t be found and apparently doesn’t have the receptors for the gallium scan radiotracers to pick it up, therefore, PRRT (lutathera) won’t have any impact on the unseen primary; only the liver, assuming those showed uptake. After my husband had his primary pnet removed our only concern was the remaining liver tumors therefore we went with a localized approach and he had radioembolization to the liver. He was in his early 50’s at the time) This was wildly successful, reducing his very heavy tumor burden to close to nothing with very short lived, not severe side effects.
Watchful waiting, with octreotide (or lanreotide which is similar) may also very well be a viable option and many specialists opt for this. The decision your doctor makes has to be individualized to your mom, her specific circumstances and her wishes. Quality of life should be a big factor. I’m glad you’re seeking out a specialist. It’s so important as a general oncologist usually does not have the required knowledge to effectively treat this disease. I wish her the best of luck.

Hello @beachboyarkansas

As it has been awhile since you last posted, I was wondering how your mom is doing. Have you visited a doctor for a second opinion yet? When convenient, could you post an update?

Mom is better. She talked to Dr that was going to do the Lutathera treatment. He got all her details. We told him we wanted to take the conservative approach. He said "that is the approach the MD Anderson would take".

So that what we are doing. Off the pill that had her down and taking the monthly shot and is back ro feeling good. This oncologist is nothing more than a drug pusher. We have learned a big lesson thru this. Thanks for asking.

We got an appointment for second opinion. Two days before we consulted with doctor that was going to do the Lutethera. We expressed we wanted conservative approach. After reviewing her records he said " MD Anderson would take the wait and monitor approach sinse it was non functional and low grade 1". He said" we have alot of patients walking around with more of this disease than you have doing nothing." So we are doind a once a month octriotide shot. She is back ro feeling good. This general oncologist is all about pushing as many drugs as insurance will pay for.

No. Taking the MD Anderson watch approach. She is taking the monthly shot. After consulting with doctor that would be doing the lutathera treatment he suggested we monitor. The local oncologist is all about as many treatments as the insurance will pay for.

I think you made a good decision. Yes, sometimes I think us oldsters with major problems are seen by some as "cash cows." From what I gathered, the Lutethera treatment two years ago had a sticker price of at least over a quarter of a million when it was all done. Thanks for letting me know.

Did you see MD Anderson in person or virtual visit?

I received my Mayo Clinic e- consult. They agreed with the biopsy finding I had from my local hospital. Metastatic neuroendocrine tumor in the liver. Grade 2 Stage IV. They did not recommend doing any further test to identify the origin. They view most likely the origin is from small intestines. Since I do not have any symptoms at this time, they do not recommend any treatment. Just monitor with scans on a regular basis. They did not provide a prognosis. Anyone been in a similar situation? I would like to know what I might expect in the future.

I appreciate your sharing your diagnosis and treatment. I have one doctor recommending octreotide and one saying just monitor and do regular scans. I thought octreotide purpose was to help with symptoms. At this point I do not have any symptoms. What is your understanding of the value of octreotide in a no symptom situation? How often do you have scans? Have your tumors grown over the years? Thanks for posting.

I have seen octriotide lessons symptoms and can reduce tumor growth. Mom wll be getting another scan end of November. If it were me i wouldn't be getting the shot. Just monitor.