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

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!

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

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

Obviously we are not doctors. I would ask about the option of if chemo is selected if there is a pill form available vs. intravenous. My wife has been on it for 9 cycles (months) and generally has been able to tolerate it I believe much better than what I heard from this forum and research. A side benefit we were not aware of, is you will not lose your hair. Not the most important factor obviously, but all things being equal, just something to share with you if ask to see if its advisable in your case.

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my liver. It's NETliver and slow moving. I'm currently a "low" grade and a petscan on 2/10 indicated the source was the pancreas, though there are two tiny spots on the pancreas and my oncologist said I don't have pancreatic cancer. The focus right now is on the liver. On 2/15 I received my first injection of somatuline depot (generic name: Lanreotide). It's a shot I'll receive every 28 days. How does lanreotide work for neuroendocrine tumors? Lanreotide is a synthetic version of somatostatin (a somatostatin analogue) and slows down the production of hormones. This helps to control the symptoms of carcinoid syndrome and slow down the growth of the cancer. It's not a cure but allows one to control and manage the growth. Next week I have two appointments with specialist. One is a radiation oncologist and the other a specialist in oral chemotherapy. One option may be to inject radioactive beads into the liver with the objective to shrink and kill the cancer. My hope is this would then result in the ability to surgically cut out the cancer at some point in the future. The Lanreotide shot was fine when given (it's a wide needle and they inject you in the butt) that grew more painful over the course of the day. At bedtime I took two Tylenol and put a cold compress on the shot area. That dissipated the pain enough that I could sleep. Though one side effect is diarrhea and I certainly had my share of that during the night. I agree with the individual who advised you to bring a note taker. I've been keeping a journal of how I feel daily, notes from hospital visits, and food intake and results Diarrhea has been issue for me and was one symptom that drove my PCP to focus on the liver this past fall. Knowing what does or doesn't upset your stomach is key to feeling better. I feel fortunate to have a plethora of excellent Dr's in the Northern VA area and the two specialists I'm meeting with next week both called to introduce themselves. The plan is to do another petscan in May or June to see how I'm progressing. I hope this info helps. I'll post again after next week's appointments. Hugs to youk8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my liver. It's NETliver and slow moving. I'm currently a "low" grade and a petscan on 2/10 indicated the source was the pancreas, though there are two tiny spots on the pancreas and my oncologist said I don't have pancreatic cancer. The focus right now is on the liver. On 2/15 I received my first injection of somatuline depot (generic name: Lanreotide). It's a shot I'll receive every 28 days. How does lanreotide work for neuroendocrine tumors? Lanreotide is a synthetic version of somatostatin (a somatostatin analogue) and slows down the production of hormones. This helps to control the symptoms of carcinoid syndrome and slow down the growth of the cancer. It's not a cure but allows one to control and manage the growth. Next week I have two appointments with specialist. One is a radiation oncologist and the other a specialist in oral chemotherapy. One option may be to inject radioactive beads into the liver with the objective to shrink and kill the cancer. My hope is this would then result in the ability to surgically cut out the cancer at some point in the future. The Lanreotide shot was fine when given (it's a wide needle and they inject you in the butt) that grew more painful over the course of the day. At bedtime I took two Tylenol and put a cold compress on the shot area. That dissipated the pain enough that I could sleep. Though one side effect is diarrhea and I certainly had my share of that during the night. I agree with the individual who advised you to bring a note taker. I've been keeping a journal of how I feel daily, notes from hospital visits, and food intake and results Diarrhea has been issue for me and was one symptom that drove my PCP to focus on the liver this past fall. Knowing what does or doesn't upset your stomach is key to feeling better. I feel fortunate to have a plethora of excellent Dr's in the Northern VA area and the two specialists I'm meeting with next week both called to introduce themselves. The plan is to do another petscan in May or June to see how I'm progressing. I hope this info helps. I'll post again after next week's appointments. Hugs to you.

@hollywood817 What prompted the biopsy, did You have imaging done before. I have plenty of liver tumors but not one is willing to biopsy it. Thank You,

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two grade 2 carcinoid in lung with large and 25 small lesions in my liver. Mine are non functioning so was told by a gruff specialist all the things that were off the table. I had to request if there was anything was told Affinitor and also chemo drug as second choice. This first doctor was very negative and unhelpful. Then went to Mayo treated more respectively which makes a huge difference. Also I had done about 1000 hours of research on nets and by now about 2000 hours. And attend the support group, exercise, counseling accupuncture and this group. I had continued to be asymptomatic as mine is non functioning. The afinitor worked for about a year with few to no side effects. Had to switch to Captem cocktail chemo pills 10/13/23 which caused fatigue some nausea and constipation it also seem to make things worse in the liver with new growth. My lungs are stable though and it has not spread beyond lung and liver so I feel the Afinitor worked for me. I have now requested a intervention radiology consult to occur this week My goal is hopefully to have bland embolization, or freezing or heating the liver tumors to decrease tumor load. My liver is working fine but if the load needs to be decreased and would like to get back on afinitor as I feel it did 80% of its job with stable lung and no other spread to rest of body except for increase in liver mets. I believe a nuanced approach is needed with this unique proliferation of cells. The most hopeful helpful discussion for me is the ABC.s of neuroendocrine cancer provided by expert doctors across the country. My question is has anyone had bland embolization or cryo ablation for liver mets and any side effects. Thank you and best to everyone,

The LACNET support group has a very interesting and supportive optimistic and helpful story the director of LACNET asked this person to post on youtube. She has Grade 3 and multiple liver mets and it,s on "Patient shares about living with high grade neuroendocrine cancer (LACNETS)". It has been two years and she is working and active and describes supports and activities she uses to live her best life. Found this presentation to be very uplifting just thought would share . She has bland embolization for her liver mets so was helpful in my case to know. Best wishes to all.