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

My 74 year old mother just got diagnosed with a 7mm neuroendocrine tumor (or so they think, they weren't able to get enough cells when they biopsied it). They say it actually shrank between the CT scan where it was found and when they did the endoscopic procedure and biopsied it. It is on the tail of her pancreas. The whole reason they found it is because my mom had sudden neurological symptoms (weakness, trouble walking, tingling in her fingers and electric shocks that felt like they shoot through her body) and she had some neurological testing and CT scan of her brain and neck and then decided to do a chest/abdominal CT scan, they found the tumor and cancelled a muscle biopsy that was scheduled... We are currently waiting to hear back if the doctors want to proceed with surgery to remove the small tumor in hopes that it is causing her neurological symptoms, but also do the muscle biopsy at the same time in case that is not what was causing her symptoms. There is a syndrome that this kind of tumor can cause involving hormones being released, but they said it is very very rare.

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


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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. 

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


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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......

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


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@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. 

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


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

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


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@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!

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


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@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?

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


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@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!

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


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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. 

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


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@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 ❤️

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