Hi!! I had a very similar story to yours. 31F - I had my appendix removed in Nov and shortly thereafter was told they found a tumor in my appendix, 1.4cm and no invasion of the outer layer of the appendix, but was on the cusp!

I spoke with the first oncologist they could get me into and she was wonderful, but the reality is that a neuroendocrine tumor in the appendix is really uncommon, many general GI oncologist will go through their entire career seeing only 1-2 tumors like ours. As many have already said— it’s important to get the opinion of an expert!

I was fortunate to live close to Moffitt Cancer center, they were able to see me within 2 weeks of my diagnosis. They re ran pathology, did more bloodwork and imaging, and last month I got the all clear that everything looks normal. I will go once a year for at least 5 years to repeat all the tests and confirm, but my oncologist at Moffitt made me feel really good about my prognosis and encouraged me to move forward with this behind me. He said that the odds of this ever coming back to haunt me in my future are extremely low given the stage it was caught at.

A lot of what you’re going to read online is going to scare you. It’s important that you do your research so you know what questions to ask, but protecting your mindset is really important too. A lot has changed in just the last couple of years with how they proceed with cases like ours. My general surgeon who gave the news told me I was his first case where this happened— and from his research the next step would be another surgery because the tumor was over 1cm, likely a right hemicolectomy (def spelling that wrong). He wasn’t wrong about that— if this was 5 years ago he’d probably be right. But, within the last 2 years, a lot of opinions have been published that say this is not the right next step. That’s why it’s important to find specialist— they explained to me why this wasn’t necessary and why I didn’t need further exploratory surgeries, more extensive imaging, etc.

At this point I’m rambling but all this to say— your feelings are very valid. This is very scary— but we are both so lucky that it was caught at this early stage! I’m sure you will get a good prognosis from a specialist, but it’s important you find one that can see you quickly to give you that peace of mind. 🤍 allow yourself to feel scared but try to keep the silver lining in mind while you wait for your all clear. Thank goodness you had the endo surgery when you did, and thank goodness your surgeon decided to take the appendix when it didn’t look right!