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.

kim1965 | @kim1965 | May 8, 2023

In reply to @michellesimpson10 "Thank you. May 8 at 8 am. 😎" + (show)

Good luck and keep us informed on your progress after your surgery as your able. Ditto on the walking as soon as possible, even day 1 is possible to start walking, it will make your feel so much each day your able on the road to recovery.

billyfeet | @billyfeet | May 9, 2023

In reply to @michellesimpson10 "Thank you. May 8 at 8 am. 😎" + (show)

I am scheduled for surgery May 26th. With the same size tumor as you have. I wish you a good result and hope you recover quickly. Please update us on your recovery.

Teresa, Volunteer Mentor | @hopeful33250 | May 9, 2023

In reply to @billyfeet "I am scheduled for surgery May 26th. With the same size tumor as you have. I..." + (show)

I appreciate you letting me know the date of your surgery, @billyfeet. Wishing you all the best with your surgery as well as your recovery.

Please post any questions you might have prior to the surgery. Have you been told how long you will be hospitalized?

kim1965 | @kim1965 | May 10, 2023

In reply to @billyfeet "I am scheduled for surgery May 26th. With the same size tumor as you have. I..." + (show)

Good luck on May 26th, we are here for you before the surgery and after, in this battle against NET. Hopefully, you have gained some ideas from this forum that will help you post surgery. Let us know how we can help.

Teresa, Volunteer Mentor | @hopeful33250 | May 16, 2023

In reply to @jodaface02 "Oh and appetite is wonderful... Can't stop eating like my taste buds we're going crazy" + (show)

Hello @jodaface02,

It has been a while since you last posted. How are you doing? Have you had any new scans?

Will you post an update when it's convenient?

kellietg23 | @kellietg23 | May 16, 2023

May 8 (last week), I had a distal pancreatectomy & splenectomy. There was a 1.1 cm neuroendocrine tumor in the central duct. The pancreas tail was atrophied. The pNET was benign as well as the 15 nodules around the spleen. The surgeon said I was lucky to have found it early (found incidentally). My take; although I am still a little shocked I had the procedure as I had ZERO symptoms, I believe if left to watch it would have only grown and likely become malignant. I am a 52 year old woman in decent shape and will have approximately
5 1/2 more weeks recovery. I’m doing ok, improving a little bit each day. Mainly I have to eat smaller meals because my stomach hurts if I eat too much and I get short of breath, more so towards the end of the day.

michellesimpson10 | @michellesimpson10 | May 17, 2023

Hello all. I’m trying to play catch up. I want to say I’m sending love, hugs and prayers to all who are here and going on this journey together.💜💜💜💜
I am 9 days post op from NET 1 , distal pancreatectomy (30% removed) along with spleen removal. The spleen began to have a fit so my incision is larger than they had planned. All in all the surgery went very well. It’s hurts like hell and I was so happy for my anti nausea medication and pain meds. I was in the hospital for 6 days. I had my first post op visit and the oncologist had my pathology report. The NET was fully formed and the margins around it are clear. They do not see a need for follow up chemo or radiation. I will have scans and blood work often to make sure it hasn’t returned. I’m very early in the healing stages and have been able to start eating real food but nothing spicy 🌶️ or fried. They may have to put me in Creon but again it’s early to make that decision
My blood sugars have come down into the green zone and I have been able to cut down my insulin intake Again this is all early and my be temporary. But I am happy for each step forward and just trying to take it day by day.
Have an amazing day
Attached photo was going into surgery

pavlina60 | @pavlina60 | May 17, 2023

In reply to @pavlina60 "@michellesimpson10 -good luck on your surgery!! And remember - get up and try to walk as..." + (show)

How are you doing, Michelle? Hope surgery was a success and you are recovering now!
God bless you and watch over you!💜💜

pavlina60 | @pavlina60 | May 17, 2023

In reply to @michellesimpson10 "Hello all. I’m trying to play catch up. I want to say I’m sending love, hugs..." + (show)

Congratulations! Now it is recovery time! Take it slow! You were lucky to have the tumour well defined and no mets! Eat small meals, nothing spicy or fried. I have been on Creon for a month ( you get used to take the pills at every meal).
Godspeed and hugs!💜💜💜

Teresa, Volunteer Mentor | @hopeful33250 | May 18, 2023

In reply to @michellesimpson10 "Hello all. I’m trying to play catch up. I want to say I’m sending love, hugs..." + (show)

@michellesimpson10
What a wonderful report, Michelle! So glad that you posted this good news. The fact that you can reduce your insulin is great.

I agree with what @pavlina60 said, eat small, frequent meals that are easy to digest. Nothing greasy or heavy. After my second surgery, well-meaning friends brought me casseroles with a cream base (not a good choice) and salads (too much roughage). Those were not friendly foods based on my recent surgery of the digestive tract.

I look forward to hearing from you as you recover. Will you keep posting updates and asking questions?