1. < Neuroendocrine Tumors (NETs)

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.

michellesimpson10 | @michellesimpson10 | May 18, 2023
In reply to @pavlina60 "Congratulations! Now it is recovery time! Take it slow! You were lucky to have the tumour..." + (show)
@pavlina60

Congratulations! Now it is recovery time! Take it slow! You were lucky to have the tumour well defined and no mets! Eat small meals, nothing spicy or fried. I have been on Creon for a month ( you get used to take the pills at every meal).
Godspeed and hugs!💜💜💜

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Thank you. Small meals are definitely what dr said. I haven’t been eating much so he wants me to make sure I eat smaller meals or snacks more often as tolerated.
I’m so thankful to have found this group to talk with and give and receive tips and encouragement

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1 reply
michellesimpson10 | @michellesimpson10 | May 18, 2023
In reply to @billyfeet "I am scheduled for surgery May 26th. With the same size tumor as you have. I..." + (show)
@billyfeet

I am scheduled for surgery May 26th. With the same size tumor as you have. I wish you a good result and hope you recover quickly. Please update us on your recovery.

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I’m praying for your successful surgery and recovery. Please keep us updated 💜💜

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1 reply
michellesimpson10 | @michellesimpson10 | May 18, 2023
In reply to @kellietg23 "May 8 (last week), I had a distal pancreatectomy & splenectomy. There was a 1.1 cm..." + (show)
@kellietg23

May 8 (last week), I had a distal pancreatectomy & splenectomy. There was a 1.1 cm neuroendocrine tumor in the central duct. The pancreas tail was atrophied. The pNET was benign as well as the 15 nodules around the spleen. The surgeon said I was lucky to have found it early (found incidentally). My take; although I am still a little shocked I had the procedure as I had ZERO symptoms, I believe if left to watch it would have only grown and likely become malignant. I am a 52 year old woman in decent shape and will have approximately
5 1/2 more weeks recovery. I’m doing ok, improving a little bit each day. Mainly I have to eat smaller meals because my stomach hurts if I eat too much and I get short of breath, more so towards the end of the day.

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I’m glad you are doing better. It’s so fortunate that your NET was found early and able to be removed. 💜💜

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pavlina60 | @pavlina60 | May 18, 2023
In reply to @michellesimpson10 "Thank you. Small meals are definitely what dr said. I haven’t been eating much so he..." + (show)
@michellesimpson10

Thank you. Small meals are definitely what dr said. I haven’t been eating much so he wants me to make sure I eat smaller meals or snacks more often as tolerated.
I’m so thankful to have found this group to talk with and give and receive tips and encouragement

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@michellesimpson10 - I started on clear broths, slowly transitioned to soft mashed bananas, soft mashed potatoes, soft scrambled egg. Everything bland :(. Take it slow and easy!!💜

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1 reply
michellesimpson10 | @michellesimpson10 | May 18, 2023
In reply to @pavlina60 "@michellesimpson10 - I started on clear broths, slowly transitioned to soft mashed bananas, soft mashed potatoes,..." + (show)
@pavlina60

@michellesimpson10 - I started on clear broths, slowly transitioned to soft mashed bananas, soft mashed potatoes, soft scrambled egg. Everything bland :(. Take it slow and easy!!💜

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Thank you. 💜💜

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michellesimpson10 | @michellesimpson10 | May 19, 2023
In reply to @hopeful33250 "@michellesimpson10 What a wonderful report, Michelle! So glad that you posted this good news. The fact..." + (show)
@hopeful33250

@michellesimpson10
What a wonderful report, Michelle! So glad that you posted this good news. The fact that you can reduce your insulin is great.

I agree with what @pavlina60 said, eat small, frequent meals that are easy to digest. Nothing greasy or heavy. After my second surgery, well-meaning friends brought me casseroles with a cream base (not a good choice) and salads (too much roughage). Those were not friendly foods based on my recent surgery of the digestive tract.

I look forward to hearing from you as you recover. Will you keep posting updates and asking questions?

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I am having to figure out what I want to eat. Anything sugary or salty does not appeal to me. Right now my comfort zone is an egg and piece of marble rye toast or chicken broth with saltines or marble rye toast

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1 reply
geraldine1961 | @geraldine1961 | May 19, 2023

I'm over the moon for you ❤️ best of luck for a full recovery 🙏

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kim1965 | @kim1965 | May 19, 2023
In reply to @hopeful33250 "@michellesimpson10 What a wonderful report, Michelle! So glad that you posted this good news. The fact..." + (show)
@hopeful33250

@michellesimpson10
What a wonderful report, Michelle! So glad that you posted this good news. The fact that you can reduce your insulin is great.

I agree with what @pavlina60 said, eat small, frequent meals that are easy to digest. Nothing greasy or heavy. After my second surgery, well-meaning friends brought me casseroles with a cream base (not a good choice) and salads (too much roughage). Those were not friendly foods based on my recent surgery of the digestive tract.

I look forward to hearing from you as you recover. Will you keep posting updates and asking questions?

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Fantastic news Michelle! Take it slow eating and walk as much as you can tolerate within the doctors instructions. It helps the healing and general pain from surgery. Keep us all updated.

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lastround | @lastround | May 20, 2023
In reply to @michellesimpson10 "I am having to figure out what I want to eat. Anything sugary or salty does..." + (show)
@michellesimpson10

I am having to figure out what I want to eat. Anything sugary or salty does not appeal to me. Right now my comfort zone is an egg and piece of marble rye toast or chicken broth with saltines or marble rye toast

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Sausage egg McMuffin’s and chocolate pudding worked for me. If you are having issues with your glucose [suger] mix cornstarch into the pudding. It keeps your numbers from spiking and is tasteless.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 20, 2023
In reply to @lastround "Sausage egg McMuffin’s and chocolate pudding worked for me. If you are having issues with your..." + (show)
@lastround

Sausage egg McMuffin’s and chocolate pudding worked for me. If you are having issues with your glucose [suger] mix cornstarch into the pudding. It keeps your numbers from spiking and is tasteless.

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Hello @lastround,

I found your suggestion interesting about adding cornstarch to pudding in order keep the glucose numbers low. I had not heard this before. Is this something that your doctor mentioned?

How are you feeling these days?

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