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.

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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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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pavlina60 | @pavlina60 | May 20, 2023
In reply to @michellesimpson10 "I will try that. We have been using the instant packages. That may make a big..." + (show)
@michellesimpson10

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

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No instant! They have ton of sugar ( even the ones that a low sugar still have some)! If you do the O/N it is not much work than instant!

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michellesimpson10 | @michellesimpson10 | May 20, 2023
In reply to @pavlina60 "No instant! They have ton of sugar ( even the ones that a low sugar still..." + (show)
@pavlina60

No instant! They have ton of sugar ( even the ones that a low sugar still have some)! If you do the O/N it is not much work than instant!

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I will have my husband go get some tomorrow and try it. Thank you

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 21, 2023
In reply to @keisham808 "Hi, Teresa Thank you! I’m so happy I found this forum as well! Yes the biopsy..." + (show)
@keisham808

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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@keisham808

Yes, I have had cysts on the pancreas. I first had a EUS which is an ultrasound done through an endoscopy. Is this the way your biopsy is being done? I was nervous about the finding because of my history of carcinoid cancer in the duodenal bulb. A biopsy was not done, however, because it looked like a cyst, not a cancerous lesion.

I've had follow-up MRIs for several years and the size and the number of cysts has remained the same. So, I feel more comfortable now with the presence of these cysts.

We have other discussions on Connect regarding pancreatic cysts. You might find them interesting and helpful as you wait. Here are the links to those discussions:
--Can Very Small Pancreatic Cysts Have Symptoms
https://connect.mayoclinic.org/discussion/can-very-small-pancreatic-cysts-have-symptoms/
--Pancreatic Cysts
https://connect.mayoclinic.org/discussion/pancreatic-cyst/
--MRI-MRCP Cyst Newbie
https://connect.mayoclinic.org/discussion/mri-mrcp-cyst-newbie/?pg=4#comment-767495

I am wondering, were you having symptoms that led to the scan where the cyst was discovered?

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pavlina60 | @pavlina60 | May 24, 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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@keisham808 - I had a large mass in the pancreas, that was discovered on a CT scan and I had a biopsy. It showed a grade 2 pNET, but after surgery biopsy showed metastases in the liver, so ' I was upgraded to stage 4).
Please - have a biopsy!!

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keisham808 | @keisham808 | May 24, 2023
In reply to @pavlina60 "@keisham808 - I had a large mass in the pancreas, that was discovered on a CT..." + (show)
@pavlina60

@keisham808 - I had a large mass in the pancreas, that was discovered on a CT scan and I had a biopsy. It showed a grade 2 pNET, but after surgery biopsy showed metastases in the liver, so ' I was upgraded to stage 4).
Please - have a biopsy!!

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Thank you! I’m scheduled for the 14th of June! Did you have any symptoms?

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pavlina60 | @pavlina60 | May 24, 2023

No symptoms, at least not ones that can make me think about it. I was 170 lbs, diagnosed with diabetes, but no meds ( diet and excersise). Lost weight (150lbs) but my blood glucose and A1C did not change. Had a stroke and during a chest CT scan the mass showed. Now - 3 months after surgery (pNET debulking, gall bladder and spleen removed, part of my stomach resected and full hysterectomy) my 1AC was normal and blood glucose in norm.

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pavlina60 | @pavlina60 | May 24, 2023
In reply to @keisham808 "Thank you! I’m scheduled for the 14th of June! Did you have any symptoms?" + (show)
@keisham808

Thank you! I’m scheduled for the 14th of June! Did you have any symptoms?

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Good luck with biopsy! Hope it is benign!!💜💜

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1 reply
keisham808 | @keisham808 | May 24, 2023
In reply to @pavlina60 "Good luck with biopsy! Hope it is benign!!💜💜" + (show)
@pavlina60

Good luck with biopsy! Hope it is benign!!💜💜

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Thank you so much! 🥰

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