Possible NET

The sooner you get the scan, the sooner you will know what your diagnosis is. The waiting causes so much anxiety as you already know. If you have a NET it is not the end of the world. You will have options. It is really hard to go through something like this alone. Maybe you could confide in a close friend about the way you are feeling. Having a personal cheerleader is very good for your mental health. Hugs to you friend.

I totally understand the fear of what may be found out from the scan. We all have that ongoing anxiety.
Often times this is one of the scariest phases. It is new and scary and you don’t know anything about the disease yet or what sort of treatments may lie ahead. It’s all a big unknown.
However, if it is confirmed as a net, you’ll be in a position to take control of it. These days with a good net specialist this disease can be treated as a chronic condition for many many years, if not forever. My husband is coming up on 16 years since diagnosis and likely many years longer than that prior to diagnosis.
While you wait through the testing, please find someone to confide in. It is a very stressful situation and not only do you need the emotional support, reducing the stress is always better for your physical well being too.
Personally, my husband has found significant stress relief not only through being able to confide in me and dear friends, but mainly through his faith and trust in God.
I pray that the scan is negative and that you find the answers quickly.

Thank you, I currently see a psychologist so I am going to mention it to her. I hear that telling someone will help with the on going anxiety.

Thank you for your healing words.

@lloomis413, I thought I would check in. Did you have further testing? Any update? How are you doing?

I was finally approved for my Netspot scan, I am scheduled for June 4th.
Will updated with their findings.

Hello @lloomis413

I'm glad that you found this forum. It is a great place to find support and encouragement during this wait time. I am a 20 year survivor of NETs, having had my first surgery in 2003.

Were you having symptoms that led your GI doctor to look for NETs?

Please share here. You are not alone. But, good for you for getting the test scheduled. You have to know what you are dealing with before you can treat it.

Yes, I was having a ton of new or worsening symptoms. Doc kept saying it was just gastroparesis, but you know your body.

@lloomis413

I'm sure that you are glad that you kept investigation the reason for the symptoms.

Here is a link to some information, which you might find helpful, about tests, etc. that can be used for diagnosing (as well as following up) for NETs:
https://www.carcinoid.org/for-patients/diagnosis/

Other than the upcoming NET Spot Scan, have other tests been done such as endoscopies? Was any blood work done to check Serotonin levels?