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 24, 2023
In reply to @pavlina60 "No symptoms, at least not ones that can make me think about it. I was 170..." + (show)
@pavlina60

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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Wow! That’s crazy no symptoms either. I don’t have diabetes but my Cancer Antigen test came back high and so did my A1C. My amalyse was really low, so i’m trying to cut the sugars back now and take enzymes to help. This is all just crazy to me. Im happy your back to normal now, that seems like a lot and a long process. But your alive so that’s all that matter 🙏🏼☺️

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1 reply
pavlina60 | @pavlina60 | May 24, 2023
In reply to @keisham808 "Wow! That’s crazy no symptoms either. I don’t have diabetes but my Cancer Antigen test came..." + (show)
@keisham808

Wow! That’s crazy no symptoms either. I don’t have diabetes but my Cancer Antigen test came back high and so did my A1C. My amalyse was really low, so i’m trying to cut the sugars back now and take enzymes to help. This is all just crazy to me. Im happy your back to normal now, that seems like a lot and a long process. But your alive so that’s all that matter 🙏🏼☺️

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Exactly! Being alive is what matters!
I am also on Creon, b/c most of my pancreas is gone and no enzymes to help digestion...

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2 replies
keisham808 | @keisham808 | May 24, 2023
In reply to @pavlina60 "Exactly! Being alive is what matters! I am also on Creon, b/c most of my pancreas..." + (show)
@pavlina60

Exactly! Being alive is what matters!
I am also on Creon, b/c most of my pancreas is gone and no enzymes to help digestion...

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Thank you for sharing! I Been concerned

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keisham808 | @keisham808 | May 24, 2023
In reply to @pavlina60 "Exactly! Being alive is what matters! I am also on Creon, b/c most of my pancreas..." + (show)
@pavlina60

Exactly! Being alive is what matters!
I am also on Creon, b/c most of my pancreas is gone and no enzymes to help digestion...

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I’m googling Creon

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1 reply
pavlina60 | @pavlina60 | May 24, 2023
In reply to @keisham808 "I’m googling Creon" + (show)
@keisham808

I’m googling Creon

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It contains lipase ( for fats), protease ( for proteins) and amilase ( for carbs) digestion.

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michellesimpson10 | @michellesimpson10 | May 25, 2023

How are you doing now? I had my surgery to remove the tail of my pancreas , the PNET and my spleen in May 8 and was discharged May 14. I’m 11 days out of the hospital. I feel pretty good. Lots of pain and not eating much but I’m able to keep down what I do eat. I’m hoping to get my abdominal drain out today and I’m sure that will help me lessen the pain and be more comfortable. All of us who are going through this are fighters and are in my prayers. Have an amazing day 💜💜

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1 reply
pavlina60 | @pavlina60 | May 25, 2023
In reply to @michellesimpson10 "How are you doing now? I had my surgery to remove the tail of my pancreas..." + (show)
@michellesimpson10

How are you doing now? I had my surgery to remove the tail of my pancreas , the PNET and my spleen in May 8 and was discharged May 14. I’m 11 days out of the hospital. I feel pretty good. Lots of pain and not eating much but I’m able to keep down what I do eat. I’m hoping to get my abdominal drain out today and I’m sure that will help me lessen the pain and be more comfortable. All of us who are going through this are fighters and are in my prayers. Have an amazing day 💜💜

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It will get better, Michelle! Keep the faith and eat - small frequent meals!

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1 reply
michellesimpson10 | @michellesimpson10 | May 25, 2023
In reply to @pavlina60 "It will get better, Michelle! Keep the faith and eat - small frequent meals!" + (show)
@pavlina60

It will get better, Michelle! Keep the faith and eat - small frequent meals!

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Thank you 💜💜. I just came from the doctor and he removed the abdominal drain. That has helped with pain relief

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1 reply
pavlina60 | @pavlina60 | May 25, 2023
In reply to @michellesimpson10 "Thank you 💜💜. I just came from the doctor and he removed the abdominal drain. That..." + (show)
@michellesimpson10

Thank you 💜💜. I just came from the doctor and he removed the abdominal drain. That has helped with pain relief

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Small steps - one at at a time!

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