Lost with no confirmation of NETs origin: Innumerable liver lesions

A few months ago, they detected 2 NETs in my liver. One golf ball size. The follow up scans showed 3. For the last few months, my medical providers have been searching for the original source. The PET scan did not show other areas, although there was a murky area at the stomach wall. I've even referred backed to GI doctor for endoscopy and colonoscopy. Is there anyone out there whose primary NET source WAS the liver? Or is there anyone whose early NET days were like mine? Thanks in advance for the help and have been grateful for this group! Linda

Start of a new journey: Pathology report of liver biopsy indicating metastatic high grade neuroendocrine cell carcinoma. MRI showing innumerable liver lesions.
Still unclear of the origin- GI tract verses pancreas (where masses also found.) First oncologist appointment since new results this week to discuss future/plan.
Any suggestions on what treatment I should look out for or ask about to prepare questions for? Stance on chemo and affects of it on the quality of life since prognosis seems grim.
Thank you!

I, too, have metastatic innumerable liver lesions, as well as in my pelvis, lymph nodes, and shoulder. My primary was a carcinoid tumor wrapped around my small intestine. I have been on Sandostatin, and now Lanreotide to help control the side effects of carcinoid syndrome. I also underwent 4 rounds of PRRT in 2020. This treatment helped stabilize everything, and I haven't had any growth or new lesions/tumors since the treatment.

Every prognosis is different. Do research and advocate, making lists of questions as you go. Take someone with you to your appointments to help you 'listen' and write down important things as it can be an overwhelming experience. And above all else, keep a positive attitude!

Hugs to you on your journey!

Neuroendocrine tumors can arise from other areas in the body and are treated differently from adenocarcinomas, which are the most common cancers in the pancreas itself. The neuroendocrine tumors make a variety of hormones such as insulin (insulinoma), glucagon (glucagonoma), and so on. I am not great with links, but you could try with copying this into your broswer.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

I’m in the same boat. I had no symptoms. It started in my pancreas and spread to my liver. I’ve got over a dozen tumors that are inoperable.
I had a hernia fixed and the surgeon noticed something on my liver and ordered an MRI. He called me and said I’d be dead by thanksgiving and don’t be bothered going to Boston hospital. That was early April 2022.
So the first thing I did when I hung up was call my primary Doctor and got an appointment in a major hospital in Boston. It should be noted that when we found out what was going on my primary ordered a test for cancer and it came back negative.
Hospital 2, I was having a lot of trouble getting my sugar , glucose, under control. Keep dropping very low, in the 40’s, I was in the hospital for the month of June last year. This went on all summer, finally the the doctor told me not to worry liver failure is a painless death, next day I got a call from the hospital and they want me to participate in a end of life study. I told them where to go…
Hospital 3, Dana Farber in Boston. They put me on chemo immediately, my sugar balanced right away and the tumors on my liver started shrinking immediately. I did chemo for 6 months and will be starting a maintenance program next month.
So all I can say is if you don’t like what you hear get a second, third and forth opinion. I think the Dr, in hospital 2 was treating me like I had regular pancreatic cancer and not NET and was clueless. One in 14 million have what we have but from what I’ve read it can be controlled but not cured.
Good luck

@lastround @kellysg thank you for your reply and support!
How did the chemo and others treatments affect you? Side effects? Research is so outdated for this and all I see is a grim prognosis of 3-6 months left with it being metastasized. With so little time- Im worried treatment would affect the quality of life that is currently there. It nice to read all the stories on this forum about getting more time and the positivity.

Well, chemo isn’t fun but my only side effect has been a metallic taste in my mouth which makes it hard to eat. Also, tired and week. It effects everyone differently but that’s the big one for me. I’ve lost 80 pounds in the last 6 months [good thing I’m a fat guy] but the weight loss and weakness is from not eating I’m sure. Mine is matastastasized too so like I said get a 2nd, 3rd opinion from someone who is not dealing with this type of cancer for the first time. Not sure how far away you are from Mayo but from what I’ve read it seems they have had dealings with this type of cancer.
When they told me I was done I told them I wasn’t ready to buy a shovel yet!
So, get a second opinion and keep fighting.
The chemo will effect your quality of life while you’re on it but the alternative is unspeakable. After you get through it and get on the maintenance program life should get back to normal, whatever normal is.
Best wishes

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I also have “innumerable” liver tumors (one radiologist estimated about 80), and unknown primary (guess is lung or pancreas).
I am at Mayo Rochester, with Thor Halfdanarson. Diagnosed Jan 2020. I was told my situation is inoperable and incurable, so stability is the goal.
At the beginning, I was not a good candidate for PRRT (not enough uptake of the tracer on PET DOTATATE scan). I started with two cycles of CapTem (pill form). It did not work at all for me and I had notable growth on CT scan within two months. I then had 10 rounds of FOLFIRINOX chemotherapy, followed by 50 rounds of FOLFIRI chemotherapy (we discontinued oxaliplatin due to worsening neuropathy). I tolerated chemo well—every two weeks for about 2 1/2 years until October 2022. Started to see growth again in the liver. They repeated the PET DOTATATE scan and my tumors had changed and I was now a good candidate for PRRT, which I started in December 2022, with octreotide injections with PRRT treatment (I do not have a mid cycle injection). I have had two PRRT cycles so far and fatigue is really my only side effect.
New treatments are coming out all the time. This type of cancer is highly unique and individual and morphs over time—treatments that once might not have worked may become a viable option later.
Things seemed very grim for me, too, at the beginning. Do not lose faith or hope. I know I might always be getting some kind of treatment, probably for the rest of my life, but I have two kids and I will take it all if it means I’m still here.
All the love, prayers, and hugs to you. Please reach out if I can help in any way.

Hi
My sugars dropped to 37 last July when I passed out in my car....found the Net in my pancreas
and lesions on my liver. I am being treated at Dana Farber..just had my 16th round of chemo..
so far thats the plan while it is working. Next scan in March.
The sugars are hard to manage,I wear a Dexcom to keep track of them so they dont get low.
I mix corn starch in my tea at night and eat an EXTEND BAR which has definitely helped me get'thru the night and no sugar issue.
Any questions please reply!!

I see that you had PRRT in 2020 and it’s been stable since.
I will have my 4th PRRT treatment in 3 weeks. Wondering what grade tumors you have.
I’m hoping for a similar outcome.