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 | Apr 20, 2023
In reply to @mir123 "I have a NET in the rare location of my breast, so I empathize. Much of..." + (show)
@mir123

I have a NET in the rare location of my breast, so I empathize. Much of the world is out of our control but as you probably already know--our attitude is under our control. I learned this in part from philosopher Victor Frankel--and he was in Auschwitz and had lost his family. As a doctor, he turned down the chance to escape because he wanted to stay with his patients. And he survived. I think your toughness of mind will serve you well, but my only advice is to focus on yourself and not on outcome. Outcome is more in G-d's hands...or for a less religious person--based on chance or fate. Wishing you all the best. I'll add that the 8 months since my diagnosis have been challenging but also full of richness, connection, and even fun.

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You are so right. Thank you. Have a wonderful day 💜💜

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1 reply
michellesimpson10 | @michellesimpson10 | Apr 22, 2023
In reply to @tomrennie "My story is similar to Kim's. Was diagnosed in August with stage 4 pancreatic cancer that..." + (show)
@tomrennie

My story is similar to Kim's. Was diagnosed in August with stage 4 pancreatic cancer that has spread to my liver. Liver has too many lesions to count. At least over 200. Been taking CAPTEM since then. Big tumors are shrinking. Liver lesions have stabilized or reduced in size. So I will continue on CAPTEM and go from there. The oncologist thinks my diabetes is from cancer. I take one insulin shot a day for it. That's it. Blood sugar never moves far from 110.

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That is wonderful news that your blood sugar is at a good level and your tumors are responding well to the treatments. I’ll keep you in my prayers 💜💜

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023
In reply to @michellesimpson10 "You are so right. Thank you. Have a wonderful day 💜💜" + (show)
@michellesimpson10

You are so right. Thank you. Have a wonderful day 💜💜

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Hi @michellesimpson10, how are you doing? I really like the question here that you first asked of members. A couple of weeks have passed and I'd love to get your thoughts of how you're feeling and what planning approaches have helped you in these early days.
- How have you organized your thoughts and information gathering?
- Where do you find information that have helped you?
- What has helped you so far to feel equipped and prepared for what is to come?

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michellesimpson10 | @michellesimpson10 | Apr 30, 2023

Hello Colleen,
Thank you for your message. I have the house almost set up and the pantry stocked.
I am up and down on the emotional roller coaster. It’s scary to face this diagnosis and then the surgery. I’m not good at not being in control or the unknown. (Marine Corps training and strong family genes ingrain that)
I have had wonderful Doctors and pre op care and they answer all my questions both verbally and with emails to make sure I know everything I can at this point.
I am ready to get this done and onto my post surgery life. My surgery is May 8.

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1 reply
kellietg23 | @kellietg23 | May 1, 2023

My surgery is May 8th too! Distal pancreatectomy & splenectomy (1.2 cm tumor on tail). No previous issues; tumor was found incidentally. I have been cleaning the house, setting up my bedroom with what I think I’ll need, delegating all my responsibilities at work and stocking the kitchen. I as well would just like to get through this and adjust to my new routine. The lack of control fuels my anxiety. Trying to stay in the moment and check my thinking. Wishing you serenity and a successful surgery. Peaceful to know I am not the only one.

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1 reply
pavlina60 | @pavlina60 | May 1, 2023
In reply to @michellesimpson10 "Hello Colleen, Thank you for your message. I have the house almost set up and the..." + (show)
@michellesimpson10

Hello Colleen,
Thank you for your message. I have the house almost set up and the pantry stocked.
I am up and down on the emotional roller coaster. It’s scary to face this diagnosis and then the surgery. I’m not good at not being in control or the unknown. (Marine Corps training and strong family genes ingrain that)
I have had wonderful Doctors and pre op care and they answer all my questions both verbally and with emails to make sure I know everything I can at this point.
I am ready to get this done and onto my post surgery life. My surgery is May 8.

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@michellesimpson10
Michelle, you got this! You are young and your body is in good shape! A surgery is a surgery, as scary as it seems - it will be over and will help! Will you have some help for the first days( week) after surgery? I hope so! Thinking of you on the 8th!( that day is my 3rd Lan injection). Hugs!!💜💜💜

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1 reply
pavlina60 | @pavlina60 | May 1, 2023
In reply to @kellietg23 "My surgery is May 8th too! Distal pancreatectomy & splenectomy (1.2 cm tumor on tail). No..." + (show)
@kellietg23

My surgery is May 8th too! Distal pancreatectomy & splenectomy (1.2 cm tumor on tail). No previous issues; tumor was found incidentally. I have been cleaning the house, setting up my bedroom with what I think I’ll need, delegating all my responsibilities at work and stocking the kitchen. I as well would just like to get through this and adjust to my new routine. The lack of control fuels my anxiety. Trying to stay in the moment and check my thinking. Wishing you serenity and a successful surgery. Peaceful to know I am not the only one.

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@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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2 replies
michellesimpson10 | @michellesimpson10 | 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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Kellie
I’ll be keeping you in my prayers. This group has helped ease my mind and prepare. You will be great 💜💜💜💜

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michellesimpson10 | @michellesimpson10 | May 1, 2023
In reply to @pavlina60 "@Michellesimpson10 Michelle, you got this! You are young and your body is in good shape! A..." + (show)
@pavlina60

@michellesimpson10
Michelle, you got this! You are young and your body is in good shape! A surgery is a surgery, as scary as it seems - it will be over and will help! Will you have some help for the first days( week) after surgery? I hope so! Thinking of you on the 8th!( that day is my 3rd Lan injection). Hugs!!💜💜💜

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Pavlina,
My husband will be off work and my mom is flying in to stay for 3 weeks.
I have more optimism now that I have been a part of this group and talking to everyone

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1 reply
pavlina60 | @pavlina60 | May 1, 2023
In reply to @michellesimpson10 "Pavlina, My husband will be off work and my mom is flying in to stay for..." + (show)
@michellesimpson10

Pavlina,
My husband will be off work and my mom is flying in to stay for 3 weeks.
I have more optimism now that I have been a part of this group and talking to everyone

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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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