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@hopeful33250

Hello @pippa05, I would like to join @skkirby and the others who have welcomed you to Connect and offered support and encouragement. As I have also had three surgeries for NETs in the duodenal bulb, I related to your diagnosis.

Information on one of the best scans to find NETs can be found here,
--68 GA Dotatate Positron
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
This is a sophisticate medical scan that is most effective in finding NETs.

I would also encourage you to find a doctor/oncologist who is a NET specialist. Here is a link to a website that will provide you with a lot of patient resources:
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
Have you had surgery yet for the NET that was found?

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Replies to "Hello @pippa05, I would like to join @skkirby and the others who have welcomed you to..."

yes, the small tumor was removed & everything biopsied fine -I am still having GI issues with sweats, cramps, dia for over 1 year. After my initial diagnosis, my oncologist sent me to a renowned cancer hospital in Boston & I don't ever care to go back. I ended up having to take an expensive Uber ride in & out of Boston, since the free transportation service never returned any of my 3 phone calls & I had to wait hours for my procedure, I have GI issues with anxiety, so I had to keep getting disconnected from machines to go running to the restroom - it was a nightmare experience which I don't care to repeat. At age 72, I am going to be very selective about my course of treatment, I know I will be sick from the disease, but I am pretty sure I don't want to be made sicker by the treatment at this stage of my life. Thank you for the websites which I will review. I wish you the best of luck, my prayers are with you.