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 20, 2023
In reply to @pavlina60 "I use oldfashioned oats. Not the prepackaged ones and never had a spike in glucose. And..." + (show)
@pavlina60

I use oldfashioned oats. Not the prepackaged ones and never had a spike in glucose. And I only put fruits and when you can tolerate them - walnuts. After my surgery my after meal glucose rarely goes above 145. Typical during the day is around 85-100.

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I will try that. We have been using the instant packages. That may make a big difference

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1 reply
keisham808 | @keisham808 | May 20, 2023
In reply to @hopeful33250 "Hello @keisham808 and welcome to Mayo Connect. I am glad that you found this forum. It..." + (show)
@hopeful33250

Hello @keisham808 and welcome to Mayo Connect. I am glad that you found this forum. It certainly helps to be able to connect with others who are dealing with similar issues.

Is your cyst located in the pancreas? Do you have a date scheduled for a biopsy?

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Hi, Teresa

Thank you! I’m so happy I found this forum as well! Yes the biopsy is scheduled in two weeks. But my mind is racing I’ve been looking on line to see how accurate is the MRIs suggestions. I know it’s really large so they can see behind it either but just wondering if anyone had something similar as it was not malignant

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 20, 2023
In reply to @keisham808 "Did they mention it being possibly cancerous from your MRI? The reason I asked is I..." + (show)
@keisham808

Did they mention it being possibly cancerous from your MRI? The reason I asked is I have a 16cm cycst they discovered and the MRI mentions cancerous my doctor says we need to do a biopsy to check and my mind is just going to know if I do or don’t.

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Hello @keisham808 and welcome to Mayo Connect. I am glad that you found this forum. It certainly helps to be able to connect with others who are dealing with similar issues.

Is your cyst located in the pancreas? Do you have a date scheduled for a biopsy?

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1 reply
pavlina60 | @pavlina60 | May 20, 2023
In reply to @michellesimpson10 "Great advice. Did the oatmeal crank up your blood sugars ? My sugars skyrocket when I..." + (show)
@michellesimpson10

Great advice. Did the oatmeal crank up your blood sugars ? My sugars skyrocket when I eat oatmeal ( pre surgery). I have not tried it since surgery.
I’m glad you are doing well. 💜💜

Jump to this post

I use oldfashioned oats. Not the prepackaged ones and never had a spike in glucose. And I only put fruits and when you can tolerate them - walnuts. After my surgery my after meal glucose rarely goes above 145. Typical during the day is around 85-100.

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1 reply
michellesimpson10 | @michellesimpson10 | May 20, 2023
In reply to @michellesimpson10 "I’m praying for your successful surgery and recovery. Please keep us updated 💜💜" + (show)
@michellesimpson10

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

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Thank you. Each day is different. Some days I’m very tired and sore. Others I’m sore and kinda tired. 🤪🤪

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michellesimpson10 | @michellesimpson10 | May 20, 2023
In reply to @pavlina60 "I had the same issue with the protein shakes ( upset stomach). Cornstarch at bedtime help..." + (show)
@pavlina60

I had the same issue with the protein shakes ( upset stomach). Cornstarch at bedtime help hypoglycemia ( overnight low blood sugar).
Now I bought protein powder and mix it with yogurt and kefir, instead of milk and tolerate it much better! Goat cheese ( not too salty) on crackers or toast is a good alternative for protein and calories; cottage cheese with fruits as a snack. I " lived on overnight oats' for the first week - easy to make and available in the morning ( oats, almond milk and yogurt in the refrigerator). After that I started adding fruits and Walnuts!
You rock, Michelle! Keep it up!

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Great advice. Did the oatmeal crank up your blood sugars ? My sugars skyrocket when I eat oatmeal ( pre surgery). I have not tried it since surgery.
I’m glad you are doing well. 💜💜

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1 reply
keisham808 | @keisham808 | May 20, 2023

Did they mention it being possibly cancerous from your MRI? The reason I asked is I have a 16cm cycst they discovered and the MRI mentions cancerous my doctor says we need to do a biopsy to check and my mind is just going to know if I do or don’t.

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2 replies
keisham808 | @keisham808 | May 20, 2023
In reply to @pavlina60 "I have been diagnosed with 16 cm PNET in December 2022.. Discovered accidentally during CT of..." + (show)
@pavlina60

I have been diagnosed with 16 cm PNET in December 2022.. Discovered accidentally during CT of my chest. Multiple CT, MRI and PET scans later, I am going for surgery on February 1st. Preparing for the worst and hoping for the best!🙏

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Did you get a biopsy?

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pavlina60 | @pavlina60 | May 20, 2023
In reply to @michellesimpson10 "Thank you. My sugars are actually back to or very close to range since I woke..." + (show)
@michellesimpson10

Thank you. My sugars are actually back to or very close to range since I woke up from surgery. I know protein drinks that I used to drink raise my sugars now and make my stomach upset.

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I had the same issue with the protein shakes ( upset stomach). Cornstarch at bedtime help hypoglycemia ( overnight low blood sugar).
Now I bought protein powder and mix it with yogurt and kefir, instead of milk and tolerate it much better! Goat cheese ( not too salty) on crackers or toast is a good alternative for protein and calories; cottage cheese with fruits as a snack. I " lived on overnight oats' for the first week - easy to make and available in the morning ( oats, almond milk and yogurt in the refrigerator). After that I started adding fruits and Walnuts!
You rock, Michelle! Keep it up!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 20, 2023
In reply to @lastround "Feeling better. Have been off the chemo since February, it took a while. Symptoms got worse..." + (show)
@lastround

Feeling better. Have been off the chemo since February, it took a while. Symptoms got worse after the treatments ended, couldn’t eat, very weak and neuropathy in hands, feet and legs.
Strength is coming back and I can eat again the neuropathy is still a problem but it is improving slowly.
The corn starch was recommended in the hospital, I think they were surprised too at how well it worked, but everyone is different. It must be something new.

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I am so glad to hear that you are feeling better, @lastround. The information on corn starch is really interesting. This might help others who are dealing with high glucose numbers.

I look forward to hearing from you again and hearing if the neuropathy is improving. Will you keep posting as you work through your recovery?

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