Scared - Suspected NET on tail of the pancreas

Posted by rockchick @rockchick, Jan 6 5:42am

Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info – are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc…is involved?

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

I had NET on the head of my pancreas so the surgery is different from yours. I saw four surgeons over 6 years, the first three recommended leaving it in and watching it. Over the six years my primary NET really didn't grow much, but it spread to my liver so in the end I needed surgery on my liver and pancreas. My NET was functioning and made me very sick for 10 years. My quality of life improved greatly after surgery. I was told my surgery was very complicated, even with a slow recovery I was back at work after 6months (I do have a desk job, so not physically demanding). I wish I had the surgery earlier. Wishing you all the best, hopefully you will find the answers you need to feel comfortable with your decision.

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@smt

I had NET on the head of my pancreas so the surgery is different from yours. I saw four surgeons over 6 years, the first three recommended leaving it in and watching it. Over the six years my primary NET really didn't grow much, but it spread to my liver so in the end I needed surgery on my liver and pancreas. My NET was functioning and made me very sick for 10 years. My quality of life improved greatly after surgery. I was told my surgery was very complicated, even with a slow recovery I was back at work after 6months (I do have a desk job, so not physically demanding). I wish I had the surgery earlier. Wishing you all the best, hopefully you will find the answers you need to feel comfortable with your decision.

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My husband is in almost the same exact situation. He does not have obvious carcinoid signs and the
tumor was found accidentally. The EUS was inconclusive. They got 3 samples but they are trying to aspirate cells and couldn’t get enough. So suspected neuroendocrine is the diagnosis. We saw a local oncologist who wanted to rush him into surgery but we felt we needed to look at other options, since these are rare. So we went to a university center that specializes in Neuroendocrine tumors and, long story short, the cure is surgery. We are sad that he has to go through this, as he has elected open surgery, but feel it will be less stressful than watching it, overall. My advice to you: get a PET scan with 68 dototate dye so you know that there a no more tumors. Robotic surgery could be an option and less invasive, if you don’t have other tumors. Find a center of excellence and doctors you trust with your care. Please take care.

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@smt

I had NET on the head of my pancreas so the surgery is different from yours. I saw four surgeons over 6 years, the first three recommended leaving it in and watching it. Over the six years my primary NET really didn't grow much, but it spread to my liver so in the end I needed surgery on my liver and pancreas. My NET was functioning and made me very sick for 10 years. My quality of life improved greatly after surgery. I was told my surgery was very complicated, even with a slow recovery I was back at work after 6months (I do have a desk job, so not physically demanding). I wish I had the surgery earlier. Wishing you all the best, hopefully you will find the answers you need to feel comfortable with your decision.

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Sorry, my comment was meant for OP!

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My wife, @kim1965, was diagnosed with NET April 2022, with mass on tail of pancreas and spread to numerous tumors on Liver also, but no other spread to other parts of body. Our Oncologist along with our Cancer Care Team at Froedert Hospital in Milwaukee plan was to start chemo(pills) to knock the NET down to a level that surgery can occur. Now after 9 cycles, surgery to remove tail/mass remaining which is much less now along with tumors on liver is scheduled March 1st. The best advice is make sure your Cancer Care team knows NET, and you have a great chance at a good prognosis in 5 years vs. other cancers. You can do it!

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@rockchick, welcome. I know you're scared. I hope you saw the helpful posts from members like @kim1965 @wifey2021 and @smt. You may also be interested in the posts in this related discussion:
– Anyone out there have PNET experiences and outcomes to share? https://connect.mayoclinic.org/discussion/neuroendocrine-neoplasm/

Rockchick, have you had surgery?

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Hi,
I am recovering from December 9, 2022 surgery to remove a 1.7 cm tumor from the tail of my pancreas. Part of body and spleen were removed also. My hospital stay was six days and pain was tolerable. My tumor was an incidental find, so October and November were months filled with test to confirm. A NETS specialist is a must!
At this point, I will have a CT Scan every three months. Meanwhile, my husband and I try to stay positive and not dwell on what might be.
Thoughts and prayers to all who are facing decisions regarding NETS!

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@wifey2021

My husband is in almost the same exact situation. He does not have obvious carcinoid signs and the
tumor was found accidentally. The EUS was inconclusive. They got 3 samples but they are trying to aspirate cells and couldn’t get enough. So suspected neuroendocrine is the diagnosis. We saw a local oncologist who wanted to rush him into surgery but we felt we needed to look at other options, since these are rare. So we went to a university center that specializes in Neuroendocrine tumors and, long story short, the cure is surgery. We are sad that he has to go through this, as he has elected open surgery, but feel it will be less stressful than watching it, overall. My advice to you: get a PET scan with 68 dototate dye so you know that there a no more tumors. Robotic surgery could be an option and less invasive, if you don’t have other tumors. Find a center of excellence and doctors you trust with your care. Please take care.

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I am having PET scan with Ga dotate on Jan.26, surgery on Feb.1. Mine is too big ( 16cm) for laparoscopic surgery. I just pray it will go well!

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@suzyis7

Hi,
I am recovering from December 9, 2022 surgery to remove a 1.7 cm tumor from the tail of my pancreas. Part of body and spleen were removed also. My hospital stay was six days and pain was tolerable. My tumor was an incidental find, so October and November were months filled with test to confirm. A NETS specialist is a must!
At this point, I will have a CT Scan every three months. Meanwhile, my husband and I try to stay positive and not dwell on what might be.
Thoughts and prayers to all who are facing decisions regarding NETS!

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The anxiety is awful. We have forgotten how to plan for the future. Cancer really does take over your life. Take care!

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Hi..what they said to you please it can come again?? Me i did the procedure this 10 December 2022 but the mass was big 20 cm my next mri on 6 juin 2023 ..trying to be positive but i cannot i just have 30 years no kids yet im so scared and i cannot put any plan for my future

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