1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Posted by ahilker @ahilker, May 24, 2023

Hi everyone. I am new to the group and wondered what kinds of symptoms others with Pnet go through. I was diagnosed just under a year ago and began the lanreotide infusion shot this past October. I went into my regular doctor last May for what I thought was a gall bladder infection. My doctor sent me in for a full abdomen CT and found a 3 cm mass on the tail of the pancreas. At the time my doctor told me we need to look at the mass first before looking into the gall bladder. After several PT scans and biopsies they can see small tumors covering my entire liver the largest being 1.1 cm. Since surgery was not an option, I started on the infusion. My nausea did not go away so I went back in to see about my gall bladder. Since then I feel 25 times worse. I’m exhausted all the time, very little appetite but no real weight loss, depression from having to rely on my family and pain around the pancreas and liver. I am grade 2 well functioning stage 4. Any suggestions would be greatly appreciated

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lindabees | @lindabees | Jan 6 9:59am
In reply to @kim1965 "@marct First of all, I can only tell our story which is very similar. My wife..." + (show)
@kim1965

@marct
First of all, I can only tell our story which is very similar. My wife was diagnosed with NET stage 4, with mass on pancreas that spread too many tumors to count on liver. We thought the worse at first, but research and our oncologist calmed us down referred us to a multi disciplinary team including a NET specialist (critical need)to help us. She had to do 9 months of chemo as her mass and tumors were not operable at diagnosis, so I believe you well ahead of us, being able to have surgery right away. After 80% reduction in all tumors from chemo, we had surgery March 23, and had the same surgery your having. We got everything out except all of tumors on liver. Currently, doing PRRT radiation treatments to keep the NET in liver at low amount and our team is considering a liver transplant if PET scan is still clear with the exception of the liver. This will hopefully reset our diagnosis to a decades potential lifespan. I could help with other questions, but be an advocate for your health and ask lots of questions of your team, and do read and research. We in the forum got your back, and will help you through this as we been through this and hopefully can give you ideas to make this a bit easier for you to work through. You got this!🙏

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@kim1965
Excellent advise!! Being your own, well educated advocate is the best advise! That’s what saved my husbands life 15 years ago when a highly regarded net specialist rejected all forms of treatment and told him to get his affairs in order. Thank God for the education we had given ourselves prior to that or he would not be here now.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 6 8:51pm
In reply to @marct "I forgot to say I am 67 year old man." + (show)
@marct

I forgot to say I am 67 year old man.

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Hello @marct and welcome to the NET support group on Mayo Connect. I see that other members of Connect have responded to your post already. I certainly value their advice that you seek a consultation with a NET specialist. All three of the Mayo locations have NET specialists. Here is a link with information on obtaining a Mayo appointment, http://mayocl.in/1mtmR63. If for any reason, you cannot get an appointment at Mayo, here is a list of NET specialists worldwide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ NET specialists have the greatest experience with treatments and are the best allies for any NET patient.

Making a treatment decision is difficult for all of us with NETs. I am a 20-year survivor of NETs and I've had three surgeries. Do you currently have a surgery date scheduled?

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stevestenberg31 | @stevestenberg31 | Jan 8 7:11pm
In reply to @kim1965 "@marct First of all, I can only tell our story which is very similar. My wife..." + (show)
@kim1965

@marct
First of all, I can only tell our story which is very similar. My wife was diagnosed with NET stage 4, with mass on pancreas that spread too many tumors to count on liver. We thought the worse at first, but research and our oncologist calmed us down referred us to a multi disciplinary team including a NET specialist (critical need)to help us. She had to do 9 months of chemo as her mass and tumors were not operable at diagnosis, so I believe you well ahead of us, being able to have surgery right away. After 80% reduction in all tumors from chemo, we had surgery March 23, and had the same surgery your having. We got everything out except all of tumors on liver. Currently, doing PRRT radiation treatments to keep the NET in liver at low amount and our team is considering a liver transplant if PET scan is still clear with the exception of the liver. This will hopefully reset our diagnosis to a decades potential lifespan. I could help with other questions, but be an advocate for your health and ask lots of questions of your team, and do read and research. We in the forum got your back, and will help you through this as we been through this and hopefully can give you ideas to make this a bit easier for you to work through. You got this!🙏

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How old is your wife? I'm 55yr old Male and I had a SI resection, primary NET, GB and some lymph nodes removed and I feel much better, no bloating or abdominal pain. I can eat more, exercise regularly and my quality of life has improved since. I ask how old b/c I'm curious about the liver transplant strategy as I also have "innumerable" liver NETS.

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1 reply
sophiarose | @sophiarose | Jan 9 8:12am

What I do know is that when I had my liver resection 4 years ago they removed my gallbladder because if I had to start Lanreotide injections my gallbladder would most likely be effected and have to be removed
I did do Lanreotide and Ocreotide injections for 1 year total and the side effects were so bad I had to stop
I am currently on Afinitor I have some side effects but I am ok

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kim1965 | @kim1965 | Jan 9 9:33am
In reply to @stevestenberg31 "How old is your wife? I'm 55yr old Male and I had a SI resection, primary..." + (show)
@stevestenberg31

How old is your wife? I'm 55yr old Male and I had a SI resection, primary NET, GB and some lymph nodes removed and I feel much better, no bloating or abdominal pain. I can eat more, exercise regularly and my quality of life has improved since. I ask how old b/c I'm curious about the liver transplant strategy as I also have "innumerable" liver NETS.

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Well we were surprised at the transplant option, our assumption was we get the NET to the lowest possible level and hope it stays at a mtn level only for decades. She is 58 years old, we are finishing up the PRRT treatments to keep it only in the liver hopefully. This summer a PET scan will be done, and if the NET is still only in the liver, she will be put on the list for a donor liver or a live donation liver. There is no guarantees even with the donated liver, but it gives her the best chance to live a long life. What other questions can I answer for you.

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Turkey | @tomrennie | Jan 10 9:06pm
In reply to @marct "I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for..." + (show)
@marct

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.

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I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what innumerable meant as it was used to describe the lesions on my liver. I took captem for 13 months. I am on my third month of just capecitabine. My pancreatic primary is about 1/3rd of its original size and my liver lesions are almost gone. I will be on capecitabine for the foreseeable future.

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2 replies
hollywood817 | @hollywood817 | Jan 11 9:28am
In reply to @tomrennie "I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what..." + (show)
@tomrennie

I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what innumerable meant as it was used to describe the lesions on my liver. I took captem for 13 months. I am on my third month of just capecitabine. My pancreatic primary is about 1/3rd of its original size and my liver lesions are almost gone. I will be on capecitabine for the foreseeable future.

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That's a significant reduction and, of course, wonderful new! Congratulations and wishing you all the best on your journey!
Tom

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1 reply
Laurell | @laurell410 | Apr 12 8:41pm

I was diagnosed March 2022 stage 4 grade 2 18%, primary tumour on the tail of my pancreas and metastasized to the liver (3 tumors on the liver) well differentiated. I receive 20mg octreotide every 28days

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1 reply
Laurell | @laurell410 | Apr 14 9:47pm
In reply to @hollywood817 "That's a significant reduction and, of course, wonderful new! Congratulations and wishing you all the best..." + (show)
@hollywood817

That's a significant reduction and, of course, wonderful new! Congratulations and wishing you all the best on your journey!
Tom

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🙏🏾in due time NED👏🏾🙌🏾

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lindabees | @lindabees | Apr 15 10:57am
In reply to @tomrennie "I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what..." + (show)
@tomrennie

I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what innumerable meant as it was used to describe the lesions on my liver. I took captem for 13 months. I am on my third month of just capecitabine. My pancreatic primary is about 1/3rd of its original size and my liver lesions are almost gone. I will be on capecitabine for the foreseeable future.

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Congratulations on the great results! I’m so interested in the fact that you’re now on just the cap for maintenance as that is what my husband is also doing now. I hadn’t yet come across anyone on a similar regiment. My husband had almost 50% reduction in his mets while in captem and now after 3 rounds of cap he is stable. (primary was surgically removed 16 years ago) Hiw have your results been while in cap only?

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