NET on liver: Question about treatments when no symptoms

Hello @beachboyarkansas and welcome to the NETs support group on Mayo Connect. I really appreciate you advocating for your mom in her recent diagnosis of NETs. I'm glad to hear that she feels good and as you said, "has no issues anywhere else or with liver function." It sounds like your mom's NET was an incidental diagnosis, i.e., there were no symptoms, but it was found incidentally. Is my understanding correct?

Many of us in this group, including myself, never had any symptoms, but the NET was found during a diagnostic test for something else. As NETs are a rare form of cancer, you are wise to consider getting a second opinion. I would highly recommend that this second opinion come from a NET specialist. NET specialists have special training in diagnosing and treating this rare cancer.

Having at least one consultation with a NET specialist (either in-person or a virtual consultation) is extremely important. Mayo Clinic has NET specialists at all three of their locations. If you would like to consult with a Mayo doctor here is a link with appointment information, http://mayocl.in/1mtmR63

If for any reason your mom cannot be seen at Mayo, here is a listing of NET specialists throughout the U.S. as well as internationally.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
As you are looking to connect with others with NETs in the liver, here a link listing posts that mention liver NETs. I would encourage you to read these posts and hit "Reply" if you would like to ask a question of any of the members.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=liver#discussion-listview
Besides scans, has your mom had other blood tests and a 24-hour urine test. Here is a listing of the various tests that are used to diagnose as well as follow up on NETS, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

I look forward to hearing from you again as you search out the best treatment for your mom. Will you continue to post your questions and concerns as well as updates on your progress in finding a second opinion?

16 Tumors were discovered on my liver December 2022. Started on Lanreotide for 3 months, switched to octreotide and have been on those shots since then. Last MRI showed no new tumors, and I believe 3 have grown. August I have PET scheduled to determine wether to start Lutathera treatments or to keep on monitoring them I am seeing a NET specialist at Mayo Jacksonville.. I would get a second opinion..

I will. And we are getting a second opinion from a NET specialist. We are wanting the conservative approach as everything i see everywhere suggest that with her circumstances. Will keep updated.

I have two carcinoid tumors on my liver and they have been there for many years. I have been on octreotide monthly for over nine years and have had no symptoms. I have just been on octreotide and the only other thing is I watch my diet, moderate eating with limited calories, veggies, a bit of protein and pasta. with no sugar and I don't eat out. I am 78 years old and have had carcinoid tumors for 22 years.
My non-professional opinion is your doctor is overdoing it. Why add Lutethera since you are on octreotide and have no symptoms? I have never taken any pill of any kind for it. If you don't have to deal with carcinoid syndrome which is a whole different deal, a lot of what an individual physician can recommend is overkill. Carcinoids are still generally slow growing. At our age it is more likely that something else will probably kill us (probably from a crash in a car ride driving to get treatment). There are only so many physicians out there that know a lot about carcinoid tumors but they will treat you anyway regardless. Again, being a non-professional, I think just being on the octreotide is good enough if you are not experiencing symptoms. I have been getting MRIs and some CATs to monitor mine all these years and things have been fine. Get a second opinion.

Thank you and we feel the same way. Why not monitor at this point. She feels fine and strong. The oncologist got mad yesterday when i suggest just monitoring it.
She had the doctate scan and they cannot find a tumor anywhere else. The biopsy showed k67 p rate of 5%.
She did have a carciniod tumor on lung resection 10 years ago. I wonder if maybe this mastis from that and was just discovered? Her tumor on liver is 4.5 cm but there is only one on liver. They are wanting to do lutathera but we want to monitor.

My two liver lesions have been on my liver for years. I have one on my heart and one in my mesentery also. but things stay stable for years and I have no symptoms. None of the four is the primary which was never discovered. A lot of doctors like to have their way and expect the patient to trust their advice 100%, no questions asked. But it is your body and your life and in the end you should decide whether you want to go one way or the other, and generally every treatment or surgery has side effects or risks There is no sure answer and we are individuals with unique bodies and unique habits and histories. And if we are wrong, so be it At least we had the final say. You have to do what you feel comfortable with and can live with. When I initially had mine discovered a doctor told me I had 3 to 5 years to live. And here we are 22 and a half years later. Actually now I am more concerned with the possibility of pancreatic cancer (hopefully remote) since my father died of it at age 75. I seriously doubt this carcinoid situation is going to get me in the end.

Did you have a biopsy in liver tumors?

No. My doctor just let them be. I consulted with a surgeon he sent me to for a consult ten years ago for possible removal and the surgeon discouraged surgery. He said since I was feeling no side effects that he was for letting them be. He said where they were located was in a place where surgery would actually be more dangerous and problematic than letting them be. They have just been there for years, neither disappearing nor growing like good hotel guests.
I am ignorant about carcinoid biopsies. My feeling is if you are going to go in and biopsy some you might as well remove them.
One thing to watch out for with carcinoid tumors is if you get them in your your intestines and you get intestinal blockage. You then need a resection to remove the blockage. I suggest anyone who has carcinoid to read up about that possibility and its symptoms. (for one thing, sharp pain) you don't want to be misdiagnosed there or think it is just a bad stomachache.

I am in a similar situation. Would be interested in where you received your second opinion and how things are for you and your Mother. Thanks for sharing.

I am interested in if your Mother did the Lutathera treatment. It was suggested to me also about two and a half years ago and after reading up about it, I avoided it like the plague. Too many imponderables and question marks and some important cautions. The physician I talked to about it and her assistant tried to use scare tactics on me as if to indicate that if I didn't have it there was a chance I would die within a year. Baloney.