What is your neuroendocrine tumor story? Let's share!

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Patients Neuroendocrine tumor

What is your neuroendocrine tumor story? Let's share!


Posted on

@Cats22 I'd advise to not consult Dr. Google. The bad thing about the internet is that there will be "experts" telling u the exact opposite thing. 

I'd say get a second opinion.... A third if u need. 

But all cases are so different that it's crucial to be mindful of what information you're taking in that may not be accurate for you and your unique situation 

I'm here if u need to talk ❤️

What is your neuroendocrine tumor story? Let's share!


Posted on

@sgyle1 I'm very very blessed. I caught my tumor SUPER early and my CT scan is totally clear. I'm taking this as a sign to be an even better nurse than I already was. I now know how it feels.... The uncertainty and fear. I will love my patients that much more and advocate for them even harder bc that feeling is absolutely horrible 

I'm not particularly religious... Maybe more so agnostic. But I believe in being good to people and I feel like with this and another rare reaction to medication (Steven Johnson syndrome n 2014)  that almost killed me I'm meant for something big!

I'm gonna try to stay positive. Thanks for your kind words of support. I'm here for u as well ❤️

What is your neuroendocrine tumor story? Let's share!


Posted on

I have battled stress induced IBS since high school.  I had my gallbladder removed when I was 20.  
last year (around September) my symptoms flavored up, but a lot was going on in my life.  By December, I ended up in the Er because the abdominal pain was so bad I was concerned it was something more serious. They ruled things out and suggested I see a GI dr.

My dr was great, I had 10 polyps removed from a colonoscopy, biopsies done through endoscopy, everything fine thankfully.  So he did more tests to find out why I had pain.

He finally had his associate do another endoscopy with an ultrasound on the end.  He was thinking that I may have stones even after all these years.  She didn’t find any, but she also routinely checks the kidneys, pancreas, small intestine, etc. when she does this.  She found what was “suspicious of but not diagnostic of a NET” in my pancreas. She said it’s 9mm.

I then went through a Pancreatic protocol CT and it did not show the lesion.

 But she persisted.  She then ordered a NETSPOT scan.  It lit up.
I will need surgery.
I met with the surgeon on Monday. After looking at all my tests, she had an idea where it is (in the body of the pancreas near the tail) but she really won’t know where it is until she gets in there. So she will not know until she gets in there how much she will need to remove.  She will also try to remove two lymph nodes that lit up as well.
She will start laparoscopically (with an incision for her hand too) and hopes to just remove the tumor.
But with veins and things, depending on where in the pancreas it is, she may find she needs to remove part of my pancreas and possibly my spleen. She may also find she needs to open me all the way up to do it.
Because she won’t know until she is in there if she will need to remove my spleen, I have to get three inoculations at least two weeks before I have surgery. They are for things your spleen helps protect you from. I received two of them on Tuesday- Pneumonia and Meningitis B.  We are going to see if I can get the third from the infectious disease doctor. 
She told me I will be in the hospital 4-5 days. I will have a tube down my nose to my stomach for two days, I will have a drain for a week to three weeks.
She went over some possible things that could happen after surgery (bleeding, pancreas leaking, etc). I already have diabetes, but it could get a little worse.
I will be out of work 4-6 weeks.
It is cancer. I asked if they knew and she said because of the way it lit up, they know it is.   But because it is a neuroendocrine tumor and not an adenoma, she thinks surgery will be enough. 
I met with an oncologist yesterday, and she agrees, but they will do pathology on the timber and lymph nodes to be sure.
She said while it won’t spread like an adenoma would, there is a chance it could metastasize to the liver and intestines, so I will always have to be monitored.
The one hiccup we face is my insurance ends at the end of the week, and we were not sure how soon the new one would start. (My husband lost his job but already started a new one). Thankfully we just found out it is retroactive and we are covered since the start date. So I need to contact the surgeon to let her know. We originally thought I wouldn’t be able to have surgery until September.

So that’s where I am right now… Scared, but hopeful.  I am trying to stay strong for my 6 year old son and thankful it is not worse. 

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