@prariezebra:
I’ve been in a similar situation and know your apprehension & fear well. 4 yrs ago my NET was discovered by a gastroenterologist’s curiosity. He went back for another look, found suspicious lesion, took a biopsy that led to my NET primary diagnosis.
If you can, have a PET scan done prior to your oncology appt. with a NET Specialist. Ask for a Gallium PET scan since you already have proof your tumor is Samatostatin Receptive (this scan will reveal exact location & size of NET tumors). Be sure to take all scan reports and discs with you to appt., as well as notes on ALL of your body’s responses for the last year or two - night sweats, diarrhea regularity, nausea, vomiting, weight loss/gain, everything that has happened with DETAILS (it all adds up to help doc for best treatment choices). Also, You can always get a referral for 2nd opinion on your diagnosis and treatment plan!
NET specialists know what is best for you (unlike regular Oncologists or surgeons who don’t know the quirks of NET tumors) and how to recommend treatment options.
My first appt included my first 28 day injection of Lanreotide, which reduces many symptoms like diarrhea, etc. and can control progression of tumors. It is just a shot in the butt - given to many NET patients that regulates hormones that can spread the disease.
Thank goodness most NET cancer is very slow growing and some patients remain stable for a long time.
There are many effective treatments as well as Surgical options that deserve your research to help you feel more confident in how to deal with this unwanted situation. Online you will find several Neuroendocrine Tumor Cancer Support groups that offer peer support, u-tube or zoom presentations by nationally respected Specialists and recommendations - like Mayo Connect that is a treasure chest of info. It is so helpful to have a “safe” place where we can get our questions answered.
I hope this lowers your anxiety level tonight. It helped me to learn as much as I could about this new world of NET cancer, become familiar with the medical terminology and where I could get the best treatment/scans/tests.
You are not alone. This is a rare cancer, but many of us are here to help you through the tough times.
I’m offering a hug and much hope that you are going to deal with this!
I am here as well as many who will reach out to you from this group… we have had experiences like this.
Bette (@dbamos1945)