1. < Neuroendocrine Tumors (NETs)

New diagnosis of NET: What should I know and do to plan?

Posted by michellesimpson10 @michellesimpson10, Apr 18, 2023

Good morning. My name is Michelle. I was just diagnosed with a 2 cm NET in the tail of my pancreas. I am 54 and have lupus as well. I am having surgery to remove the tail of the pancreas and my spleen as soon as I have my vaccines next week and wait the 10 days. So the surgery should be the first week of May.
I had my gallbladder removed 11 years ago after being diagnosed with Lupus. I have had pancreatitis flare ups since 2011. I am not a drinker or smoker or I barely take any pain meds. I am a Marine so I know how to be strong and fight this mentally and block out physical pain.
I have to admit I’m scared of this diagnosis and what it means for life moving forward. I am not worried about diet changes or adjusting my routine. I already have type 2 diabetes and over the last almost 2 years blood sugar is never controlled and runs very high Diabetic medicines do not seem to control it as well as my husbands when he takes his medication I guess the tumor is why that may be.

I’m trying to put together a plan of what to know, do and how to prepare for the surgery and recovery.
What should I know and do?
Thank you and I’m praying for you all

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

michellesimpson10 | @michellesimpson10 | May 1, 2023
In reply to @pavlina60 "You will be back to your "old" self in no time! I am much older with..." + (show)
@pavlina60

You will be back to your "old" self in no time! I am much older with more complicated surgery ( did I mention my pancreatic rumor was 1.8 KG!) and I made it. Will be thinking of you when I have my Lan injection :).💜💜

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Big hugs to you. I’m so glad you are doing so well. Have an amazing day 💜💜

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kellietg23 | @kellietg23 | May 1, 2023
In reply to @pavlina60 "@kellietg23 - You got this! I had a complicated surgery - distal pancreatectomy, splenectomy, gall bladder..." + (show)
@pavlina60

@kellietg23 - You got this! I had a complicated surgery - distal pancreatectomy, splenectomy, gall bladder and hysterectomy - 9hrs and I am 62! 2 months later I am almost back to normal ( still not going to work, though). Wishing you succsessful surgery and easy recovery!! God bless!💜💜💜

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WOW! That is quite a surgery. You rock! Thank you for the encouragement.

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billyfeet | @billyfeet | May 2, 2023

I am also facing distal pancreatectomy with spleen removal and possible gall bladder removal. I was diagnosed incidentally with no symptoms in February. Surgery is late May….I am using UCSD Cancer Center for treatment. This certainly was a shock getting a report of a 2CM mass on tail of my pancreas…..just thankful that it was determined by biopsy to be a neuroendocrine tumor grade 2. I am preparing for surgery by getting my home nice and clean and organized and working with my girlfriend to understand the realities of recovery from this surgery. She is helpful and hopeful! I wish for a fast recovery for the others who are getting surgery. This will be a challenging time for us but with good surgeons and helpful care givers we can get through.

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1 reply
michellesimpson10 | @michellesimpson10 | May 2, 2023
In reply to @billyfeet "I am also facing distal pancreatectomy with spleen removal and possible gall bladder removal. I was..." + (show)
@billyfeet

I am also facing distal pancreatectomy with spleen removal and possible gall bladder removal. I was diagnosed incidentally with no symptoms in February. Surgery is late May….I am using UCSD Cancer Center for treatment. This certainly was a shock getting a report of a 2CM mass on tail of my pancreas…..just thankful that it was determined by biopsy to be a neuroendocrine tumor grade 2. I am preparing for surgery by getting my home nice and clean and organized and working with my girlfriend to understand the realities of recovery from this surgery. She is helpful and hopeful! I wish for a fast recovery for the others who are getting surgery. This will be a challenging time for us but with good surgeons and helpful care givers we can get through.

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I’m so glad you have help and support at home. I’ll keep you in my prayers for a smooth recovery. It is a lot to process. So fortunate that there is a treatment that will help us all.
Please let us know how you are doing

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pavlina60 | @pavlina60 | May 4, 2023

@billyfeet - I had the same surgery on Feb.1 2023. ( plus hysterectomy, which made it longer and more complicated, large incision). I am almost fully functional now , 3 mo later. Not going to work though, as I have some side effects from the lanreotide.
I was in the hospital for 6 days. It is important to move after surgery - I was up the next day and went 300yrds, seems like a marathon :). Keep the faith, be positive! It will be a success! Let us know how did your surgery go!💜

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1 reply
michellesimpson10 | @michellesimpson10 | May 4, 2023
In reply to @pavlina60 "@billyfeet - I had the same surgery on Feb.1 2023. ( plus hysterectomy, which made it..." + (show)
@pavlina60

@billyfeet - I had the same surgery on Feb.1 2023. ( plus hysterectomy, which made it longer and more complicated, large incision). I am almost fully functional now , 3 mo later. Not going to work though, as I have some side effects from the lanreotide.
I was in the hospital for 6 days. It is important to move after surgery - I was up the next day and went 300yrds, seems like a marathon :). Keep the faith, be positive! It will be a success! Let us know how did your surgery go!💜

Jump to this post

Glad you are doing so well 💜💜💜💜💜💜

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