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

I was just told last week that I have a NET on my small intestine after having undergone a routine colonoscopy and being told there was an area they biopsied that looked suspicious. I am meeting with a surgeon in a couple of weeks for a consult. I honestly don’t know what to expect and I keep scouring the internet for answers. Waiting two weeks for this appointment is tough. Not knowing what to expect is tough. I just don’t know what I’m supposed to be feeling right now.  I am definitely still in shock. 

I was just diagnosed yesterday. I'm so scared..... I feel hopeless..... Im 31 and I just feel so numb right now. I had been having frequent loose stools and a lot of nausea. I managed to get an endoscopy and colonoscopy and a suspicious polyp was found. The tumor was inside the polyp but I don't know much more than that and it's grade 1 which I'm understanding is different than staging. I meet with my surgeon again Friday and it's back to surgery soon after but not knowing is hellish. I want to scan my entire body at this point because I am so scared that there's gonna be more. I'm lost. I'm drowning. I don't know how to handle this. I'm a nurse myself and I feel like I should be stronger but all I want to do is cry in bed..... Maybe I'm being dramatic.... Maybe it's gonna be fine and they can remove it all.... But it's all a bunch of maybe and uncertainty and I just need to talk about it. I'm trying not to isolate myself but I just want to curl up and cry..... I don't want to die......

@Kimba5368 my diagnosis is new as well and im waiting to speak to my surgeon too.... I'm scared and im sure u are too. Sending you lots and lots of love. 

@Wendy101 thanks for this great advice. I will def look for a specialist. Lots of love 💞

@Paulboo I've been newly diagnosed and want to extend my love and support. Reach out if u want to talk. We are in this together!

@Xbundle‍ you are in my thoughts.  I know it’s scary right now. Once you meet with the surgeon and have your tests then you’ll know what you’re dealing with. Right now there’s a lot of uncertainty. Is your meeting with the surgeon this week? Is it just a consult? Have you had any CT scans?

@Kimba5368 he called me this past Friday a few days ago and told me to make an appointment in 1-2 weeks. I made one for this Friday but after this weekend I realized I can't wait that long and now they are seeing me tomorrow. He did tell me anything so I believe it's a consult which will likely result in a surgery being scheduled to achieve negative margins. I haven't had any CT scans but I absolutely will be asking him about that. I am writing down all my questions as we speak for tomorrow. I refuse to be rushed like he did on the phone. I deserve answers. I'm also looking into specialists. I'm a nurse but when I was a nurse assistant I was at the bigger hospital in the network and they have a cancer center. I want the best treatment possible.

I'm still scared due to the uncertainty but I've shaken the terror off and now I'm fighting!

awesome!! I am also looking into seeing a specialist at a cancer center since our type of cancer is rare. It’s so crazy to me that 2 weeks ago I was getting a routine colonoscopy and today I have cancer. It’s surreal. 

@Kimba5368 I had my follow up today and with surgery I'll be essentially "cured". I was blessed to catch this insanely early. I'm praying for you to have a great prognosis as well and im here if you need to talk ❤️

@Xbundle‍ great news!! Is the surgery just removing the tumor or is there more involved?