Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

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

@tomrennie

My Mayo care team never said terminal.

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These type of conversations are not helpful to what the goal of the forum is I believe. We all are here to try to help each other battle NET’s.

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@kim1965

These type of conversations are not helpful to what the goal of the forum is I believe. We all are here to try to help each other battle NET’s.

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Not my intent. But I do have a problem when things are misrepresented. I am just trying to learn, so I will ask questions.

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A gentle reminder about the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/#ch-tab-navigation

In particular I'd like to point out guidelines number 2.

2. Remain respectful at all times.
– Exercise tolerance and respect toward other participants whose views may differ from your own.
– Disagreements are fine, but mutual respect is a must.
– Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

There are many terms that people and medical professionals use when discussing stage 4 cancer such as advanced cancer, metastatic, terminal, non-curable, etc.

With today’s treatment advancements, more and more patients live many quality years with metastatic cancer.

That said, I recognize that words matter. In this supportive community, I ask that each member respectfully allow the other to define their cancer in terms that speak their reality.

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@wifey2021

My husband has (had) a 2.7 tumor in the tail of his pancreas, found incidentally, that was just removed yesterday. He is doing well, and we are thrilled that it is gone. He retained 2/3 of his pancreas and his spleen was removed. I know full well the stress that this brings about. It’s been 4 months of full-on anxiety.

You mentioned having had a number of issues, I wonder if there are scans you can go back to get a growth pattern. He had had a CT to check and hernia repair one year before the tumor was found (tumor went unnoticed at that time). They referred back to it and found that it had not grown. This gave us the confidence to find a NET specialist, as we felt we had some time. Our local doctors did not take the time to do anything other than suggest surgery and we wanted to feel certain it was the best approach. We chose to drive 90 minutes to a university hospital and what a difference! Lots of tests later, he decided on surgery, feeling like he had explored it thoroughly. Time is a gift; use it to your advantage.

I know the watching and waiting would not have been the best option for my husband, as everyone handles that kind of thing in their own way.

All the best to you!

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I’m glad he is doing well. Big hugs to you both. It’s very scary. I’m having surgery in the morning for a NET 2 cm in the tail of my pancreas and spleen removal.

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We are here to support you, pray for you and send love. It is very scary. I’m newly diagnosed with 2 cm NET in tail of pancreas. I’m having surgery in the morning to remove tail and spleen. From what I have read from other people on here, it is best to find a NET specialist and do what is best for you.
I’ll say prayers for you and follow your journey.

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@michellesimpson10

We are here to support you, pray for you and send love. It is very scary. I’m newly diagnosed with 2 cm NET in tail of pancreas. I’m having surgery in the morning to remove tail and spleen. From what I have read from other people on here, it is best to find a NET specialist and do what is best for you.
I’ll say prayers for you and follow your journey.

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I'll be thinking about you tomorrow, @michellesimpson10. I hope your surgery goes well tomorrow and that your recovery is uneventful.

Will you post again and let me know how you are progressing?

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@hopeful33250

I'll be thinking about you tomorrow, @michellesimpson10. I hope your surgery goes well tomorrow and that your recovery is uneventful.

Will you post again and let me know how you are progressing?

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Thank you. I will post when I’m able to. I’m just ready to have the surgery and find out what the pathology report shows so I know what my next steps are.
Have an awesome day

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@michellesimpson10

Thank you. I will post when I’m able to. I’m just ready to have the surgery and find out what the pathology report shows so I know what my next steps are.
Have an awesome day

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Wishing you all the best, @michellesimpson10! What time is your surgery scheduled?

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@hopeful33250

Wishing you all the best, @michellesimpson10! What time is your surgery scheduled?

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Thank you. May 8 at 8 am. 😎

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@michellesimpson10

I’m glad he is doing well. Big hugs to you both. It’s very scary. I’m having surgery in the morning for a NET 2 cm in the tail of my pancreas and spleen removal.

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@michellesimpson10 -good luck on your surgery!! And remember - get up and try to walk as soon as you can! ❌⭕💜💜💜

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