Lost with no confirmation of NETs origin: Innumerable liver lesions

@mbg20 my primary oncologist is Dr Dar (primary office is in Leesburg, VA). Dar was recommended by my PCP and has been excellent so far. He is compassionate and quick. He referred the two radiation specialist and one called me within the hour of Dar's recommendation to introduce himself, the other's asst called same day to schedule an appointment. I appreciate the attention! I was to see Dr Sibley (radiologist) but he was vaca so I met with another Dr in his office who I wouldn't recommend just due to his bedside manner and the fact that he handed me a pamphlet and said everything I need to know I can find there. I met with a 2nd radiologist who was excellent, Dr Alain Drooz. The three oncologist are meeting to discuss next treatments (I am currently on a 12 week Lanreotide program). The options are TACE (Adriamycin) or PRRT. Both chemotherapy with TACE being a more concentrated dose directly into the liver. TACE can also be administered while I undergo the Lanreotide treatment while I was told PRRT needs me to complete the current program first. I hope this helps and don't ever hesitate to reach out to me with questions. Note I haven't gotten 2nd opinions as I think the input from all 3 oncologists should suffice for now. - Tom

I had similar in Dec22 they did a PETScan 1/19/23 and found the origin to be in the small intestine. Now taking Somatuline depot monthly. Just turned 55. Did your father have a PETScan yet?🙏

Welcome, @stevestenberg31, I believe your question "Did your father have a PET scan yet? was directed to @k8lyn23, whom I'm tagging here so they see it.

Steve, how are you doing on somatuline depot? Any tips for someone who may be starting this treatment?

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not an option right now. Everyone is still convinced the origin is small intestine also. 2nd cycle of carboplatin and etopiside this week. He tolerated the first cycle with no issues. The only issue we have had that had him readmitted in the hospital is pain control. Uncontrolled pain in his abdomen and mainly on the side where his liver is.

I have pancreas to liver NET. The chemotherapy drug I was on was Flofox and a once a month shot of Oxaliplatin.
After 12 rounds [6 months] the tumors shrank about 60% [10 centimeters to 4]
From what I’ve read Flofox is the same treatment for colon cancer.
Ask your Oncologists about it.
Good luck.

P.S.
Has he had a MRI? That’s the only way to get a good look

Hello @stevestenberg31,

I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion on Mayo Clinic Connect. You mention that NETs were found in the small intestine. I am a 20-year survivor of NETs in the upper digestive tract. My NETs were found incidentally during a routine upper endoscopy, I had no symptoms.

If you are comfortable sharing more, I'm wondering what symptoms, if any, led to your diagnosis? Has surgery been suggested?

My symptoms were bloating, severe abdominal pain resulting in slight temperature spike and vomiting. This happen 2X one month apart after weekends of eating big meals drinks out etc. We thought maybe gallstones so i went in for an ultrasound my GP recommended. They found leisons on my liver that turned out to be NETs that spread from my small intestines im currently on my second monthly injection of Somatuline (aka Lanreotide). The side effects vary by week. Im assuming based on my diet and the slow release of the treatment. 🙏

Im an otherwise healthy 55 yr old, so i thought. And no surgery has been recommended to date

Thanks for providing more information on your symptoms and the process of getting a diagnosis. Is the Somatuline helping with your symptoms?