Should I want more treatment after pancreatic nets with lymph nodes?

Posted by augustine777 @augustine777, Jul 22 8:49am

I had two 2 cm grade 2 (well-diff) NETs removed with a distal pancreatectomy and splenectomy. So, stage 3 pancreatic cancer. Before surgery, they thought that this would be all that was needed. Then, they found 3 of 12 lymph nodes were cancer as well. My oncologist said that there is about a 40% chance of it coming back in my liver or somewhere else. But, since surgery, I have had one scan and some tests but no chemo or anything.

I guess I am surprised that with that high of a chance of moving to stage 4, that I am not doing any adjuvant therapy, chemo or anything to try to kill some of the possible cancer cells.

Although my oncologist has dealt with quite a few NET patients, I am being referred to a specialist this month. Should I want something done to reduce that chance? Does anyone know what options there are? I just had an MRI last week, and I don’t have any actual tumors currently.

Thanks.

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

I have Grade 2 Stage 4 pNET ( due toliver metastases) and am currently on Lanreotide once a month. CT scan after 3 injections showed no new growth.

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I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to the liver. I also have carcinoid syndrome (hot facial flushing). Started on Lanreotide, after 3 months the flushing did not stop, switched to octreotide, and within three days the flushing ended. June I had a follow up MRI, which showed no growth of existing tumors, and no new growth. I am being treated at Mayo Jacksonville, also no radiation or chemo.

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Thank you both for your replies. It sounds like those therapies are working well for both of you. That’s amazing.

At this point, it has not metastasized to my liver yet. In fact, he’s 60% sure I won’t have any more cancer at all. But that 40% seems really high to me. I feel like I’m just waiting for one of my scans to show tumors on my liver. Do you know of any adjuvant therapies that can kill cancer cells before they metastasize to the liver?

Thanks.

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@vinnie694

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to the liver. I also have carcinoid syndrome (hot facial flushing). Started on Lanreotide, after 3 months the flushing did not stop, switched to octreotide, and within three days the flushing ended. June I had a follow up MRI, which showed no growth of existing tumors, and no new growth. I am being treated at Mayo Jacksonville, also no radiation or chemo.

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It sounds like the Octreotide therapy works for you. Was there any surgery done before the Lanreotide treatment ?

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4% survival rate? Over what period of time?

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Either 5 or 10 years. My esophagus cancer is 20 over 10. I'm 2 years in to stage 3 b. I'm doing everything possible to keep my body intact, pain minimal without impairment drugs. Trying to enjoy what time I have left . And the older you are the worse these cancers are on you. Blessings to you.

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Hi, Did they do a PET scan ? I have stg 4 grade 1 Pnet and I have 23tumors on my liver as well as lymph nodes and one on the pancreas. I am on somastation because it works better with me. Go to the specialist since they will be more on top of it. it was a PET/CT Cu64 Dotatate scan to be exact and I had 3 embolizations which they shrunk them, 3 large tumors, and it helped with the pain which will put me on my knees when it hits me. I have serious pain with mine, some don't. Good luck, stay strong and this to will pass.

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@sturns

Hi, Did they do a PET scan ? I have stg 4 grade 1 Pnet and I have 23tumors on my liver as well as lymph nodes and one on the pancreas. I am on somastation because it works better with me. Go to the specialist since they will be more on top of it. it was a PET/CT Cu64 Dotatate scan to be exact and I had 3 embolizations which they shrunk them, 3 large tumors, and it helped with the pain which will put me on my knees when it hits me. I have serious pain with mine, some don't. Good luck, stay strong and this to will pass.

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They did a pet scan right before surgery, and did not find any metastasis to my liver. They just did an MRI, and other than finding an arterial perfusion and non-alcohol fatty liver disease (bummer) they didn’t find any lesions or tumors. So, as it stands, I don’t have any tumors. I am wondering if anyone has any experience with chemo or other therapies to go after cancer cells before they are tumors. With the lymph node involvement I had (3 of 10) next to my pancreas, my oncologist is concerned about cancer coming back.

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@vinnie694

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to the liver. I also have carcinoid syndrome (hot facial flushing). Started on Lanreotide, after 3 months the flushing did not stop, switched to octreotide, and within three days the flushing ended. June I had a follow up MRI, which showed no growth of existing tumors, and no new growth. I am being treated at Mayo Jacksonville, also no radiation or chemo.

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Hi there Vinnie,
I was recently diagnosed with the same, metastasized to liver. Did you have small intestine resection surgery and liver debulking before starting the injections? That is what they are suggesting for me, and I am very scared of the surgery. Mine are grade 1, stage 4. I have no facial flushing…just diarrhea. I'm going to Mayo Clinic in Phoenix. I'm hoping you continue to do well with your injections and sending positive healing energy your way!

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I was diagnosed with stage 4 pancreatic NETs to liver in 8/22. I will start my 12th CAPTEM chemo cycle on Tuesday. If there is a magic treatment that keeps cancer from growing and spreading, when there is no evidence of cancer on MRIs and/or scans, please let me know what it is and who makes it. I want to yell at my Mayo care team in Phoenix for not presenting it as an option. I also want to invest in the company that makes it. Thank you.

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