1. < Neuroendocrine Tumors (NETs)

Newly diagnosed - neuroendocrine tumor in intestines

Posted by wagneriandreamer @wagneriandreamer, Oct 31, 2022

on routine ct scan found a small abdominal mass. wasn't clear where it was originating from . went to gyn oncology. finally decided it wasn't gyn. had mri. was scheduled for surgury but surgeon wanted endodrine to clear me first. she did labs, 24 hr urine and pet scan. some labs and first urine got "screwed up by lab. my tumor has gotte.n much ,much larger. it has been a month since this happened. my surgury has been rescheduled twice. i am scared!!!! i feel like by the time i can have surgury they will tell me "it is to late. i had faith in all my drs seen here but now worried i should have gotten 2nd opinions at the start and now it is to late.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2022
In reply to @wagneriandreamer "it's scheduled for the 15th of this month. i will definetly update you. How's that for..." + (show)
@wagneriandreamer

it's scheduled for the 15th of this month. i will definetly update you. How's that for being positive??? several weeks ago i didn't think it would make it through surgery. i'm really trying to stay positive.

Jump to this post

Thanks for the update on your surgery date, @wagneriandreamer. I know that a positive attitude will help you! Keep it up and check in and let me know how you are doing.

I look forward to hearing from you again!

REPLY
char1962 | @char1962 | Nov 8, 2022
In reply to @char1962 "I never heard of that test I have to google that , what I can tell..." + (show)
@char1962

I never heard of that test I have to google that , what I can tell you is stressing out about it is only going to make you go crazy , and can lead to other medical problems, I’m glad your going to speak to your surgeon so he can give you some peace of mind 🙏🏽 hang in there , I get another cat scan November 7 and I pray the tumors on my ovaries and liver haven’t grown anymore since I’ve been getting the sandostatin shots , my husband and children have been a good support system for me , but this support group gives me the knowledge I need to combat this condition I have my tears but I don’t allow them to consume me I have to be strong ..

Jump to this post

I’m so happy to announce I had a good report on yesterday, November 7 my cat scan show no growths from the tumors on my liver and ovaries so the sandostatin shots are working , I cried with tears of joy the anticipation was a roller coaster of emotions but I kept the faith , my faith in God is what keeps me grounded, I thank God for this support group it’s been so helpful to me during this health journey in my life 💕

REPLY
2 replies
char1962 | @char1962 | Nov 9, 2022

Thanks everyone , May God continue to bless us and keep us all during our health challenges which can be a roller coaster , hang in there everyone don’t give up 🙏🏽

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 9, 2022
In reply to @char1962 "I’m so happy to announce I had a good report on yesterday, November 7 my cat..." + (show)
@char1962

I’m so happy to announce I had a good report on yesterday, November 7 my cat scan show no growths from the tumors on my liver and ovaries so the sandostatin shots are working , I cried with tears of joy the anticipation was a roller coaster of emotions but I kept the faith , my faith in God is what keeps me grounded, I thank God for this support group it’s been so helpful to me during this health journey in my life 💕

Jump to this post

I so appreciate you sharing your good news, @char1962! It's just great when a treatment works.

I agree that this journey often feels like a roller coaster ride. As we all have different coping mechanisms, can you share how you deal with the anxiety that accompanies this process?

REPLY
char1962 | @char1962 | Nov 10, 2022

Thank you I love to share , I’m the type of person that looks at the glass half full instead of half empty , meaning I look for the silver lining in every situation . I know it’s not easy , but it’s a must otherwise your go down a rabbit hole of despair, I limited the amount of negative T.V and watch comedy shows and hgtv and cooking show anything you enjoy don’t stop doing it , be grateful for each day your alive to be with the ones you love , I’m big on creating find memories with my family and friends , because one thing this condition has shown me is life is short and you don’t have time to waste..

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022
In reply to @wagneriandreamer "it's scheduled for the 15th of this month. i will definetly update you. How's that for..." + (show)
@wagneriandreamer

it's scheduled for the 15th of this month. i will definetly update you. How's that for being positive??? several weeks ago i didn't think it would make it through surgery. i'm really trying to stay positive.

Jump to this post

Hi @wagneriandreamer, I hope your surgery went well on the 15th. I just wanted to let you know that I was thinking of you and look forward to your update when you're able.

REPLY
1 reply
triveraderubio | @triveraderubio | Nov 20, 2022
In reply to @char1962 "I’m so happy to announce I had a good report on yesterday, November 7 my cat..." + (show)
@char1962

I’m so happy to announce I had a good report on yesterday, November 7 my cat scan show no growths from the tumors on my liver and ovaries so the sandostatin shots are working , I cried with tears of joy the anticipation was a roller coaster of emotions but I kept the faith , my faith in God is what keeps me grounded, I thank God for this support group it’s been so helpful to me during this health journey in my life 💕

Jump to this post

God is Good! Amén! Thank you for sharing! 🥰

REPLY
bellpch9 | @bellpch9 | Dec 3, 2022
In reply to @wagneriandreamer "I feel much better after talking to the surgeon again. My 24 HR urine results are..." + (show)
@wagneriandreamer

I feel much better after talking to the surgeon again. My 24 HR urine results are in but the endocrinologist hasn't called yet. Most of the results were within range but the meta -nephrine was low as well as the epinephrin. according to the surgeons notes from my visit she will be starting me on some kind of blockers before the surgery . hopefully all the pre open stuff is taken care of now and I can concentrate on trying to have a positive attitude.

Jump to this post

Urine results are very important I was told.
I’m at that stage just got CT scan on adrenal gland back they want MRI but we are cash pay stuck across country, I asked for urine sample first. Stuck in between 😳
Praying for your success.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 3, 2022
In reply to @bellpch9 "Urine results are very important I was told. I’m at that stage just got CT scan..." + (show)
@bellpch9

Urine results are very important I was told.
I’m at that stage just got CT scan on adrenal gland back they want MRI but we are cash pay stuck across country, I asked for urine sample first. Stuck in between 😳
Praying for your success.

Jump to this post

Hello @bellpch9 and welcome to Mayo Connect. From your post, it looks as if you have a tumor on the adrenal gland. Is that correct? Is the urine test to determine if this is a NET?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.