Lost with no confirmation of NETs origin: Innumerable liver lesions

@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.

Sounds like our cancer is very similar. The good thing for me is that Carcinoid cancer is slow growing. I was diagnosed in 2007 so I've been holding my own for a long time!

Ring that bell when you get that 4th one done!

@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,

Honestly, I had never even heard of this type of cancer before I was diagnosed. I find MayoConnect so helpful because it allows all of us to seek out support and share our personal experiences. I have to believe this is all happening “for” me, not “to” me. Even that small mindset change has made a world of difference for me. Sending you much love and hugs!!
We can do this.

Yes.

@margaret12 I had fatigue and stomach issues (cramping and diarrhea) off and on beginning in August. I had Covid in June and again in July and assumed the symptoms were long Covid. My PCP ran blood tests in October and my ferritin count was 3x normal, which can occur when the liver has been compromised. High ferritin counts can be rectified by blood donations which is the path we took. But my PCP, a saint in my eyes, wanted to be certain no harm had come to the liver from the high ferritin count so she had me get an ultrasound of the liver which showed some spots. We then had a catscan done on 12/21 which confirmed the spots followed by a biopsy on 1/5. All 3 steps happened within 3 weeks. The biopsy came back "cancerous" for LiverNET which fortunately is slow moving. I've since had an ultrasound and catscan of my heart as the increased hormones which occur with liverNET can cause your aorta to thicken. Both of those tests came back "normal". I've been eating well (no red meat) and drinking 80-100 oz of H2O daily as well as 12 oz of Chaga tea (a mushroom which helps with liverNET. Also haven't had any alcohol since ultrasound diagnosis on 12/19 and suspect my love of red wine to be something I won't taste again...and that's ok. The medicinal mushrooms haven't been extensively tested on humans but as long as I don't drink too much of the tea (toxins) I feel I'm ok. Note I did have a few weeks of waiting for my shot of lanreotide and felt I needed to do something to address the cancer. Since drinking the chaga tea the mild pain I had when taking deep breaths has dissipated. Placebo effect? Maybe. But I feel better. I exercise daily (fast walk, core and light weights, I've run 20 marathons/ultramarathons) and am a 62 yr old male who at 5'10" 170 lbs feels great. I wish you well in your journey. You will definitely beat this thing! Stay positive...life is a journey and I'm here to assist you with yours in any manner possible.

I was in for a healthy heart check and spots were seen my liver. I promptly had scans done and was told I needed a liver biopsy which confirmed Neuroendocrine, origin point was found to be the small intestine.

I never heard of it either, from what I’ve read 1 in a million get this if metastasis it’s 1 in 14 million.
We should all get together and buy a lottery ticket.

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,

I also had multiple small lesions in my liver and a few larger ones. I decided on SirSpheres Y90 embolization which did a great job on the small ones and reduced the larger ones. I did get radiational pneumonia from it though. They did microwave ablation on the larger ones later when my ileum primary was resected. A minute bowel leak kept me having recuring abdominal abscesses for the next year. From now on I will let one thing heal before having something else done.