Scared - Suspected NET on tail of the pancreas
Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info – are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc…is involved?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thanks so much. Mine was only 20ml for 2 weeks then doubled to 40ml so they are keeping it in for now. I think the concern is that it was low then doubled instead of decreased.
Dr. Reggie Saldivar is the doctor that I see and his nurse Debbie, that are in supportive care, they are wonderful
Memorial Sloan Kettering rocks in general. Lots of great people. After my surgery, there were no more double rooms so they gave me the VIP PH suite with a living room, view of the 59th St Bridge, private concierge, maintenance that cleaned the room twice daily, and gourmet food though I couldn't really eat. The staff teased that I was a celebrity since I had the celebrity room.
Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out.
I had a wipple procedure in March 2019 which went very successful; they caught everything and I was back to work in 3 months, living the rest of my life on Creon and Omeprazol.
Unfortunately at my last scan in Dec 22 they found liver lesions, now confirmed as NET tumor. Did not have a scan for 2 years due to work / covid but I wish I had.
Found this forum on my research for my first oncologist appointment on Feb 27. Thanks a lot for all the info which is very helpful.
So sorry to hear about your reoccurrence. Praying for you.
Praying for you.
And please get regular scans after this. I am so worried about any kind of reoccurrence that I plan to have one every three months. There is no way I could not worry and go 2 years!
Update- surgery on Feb.1st went well. My tumor was humongous – 1.8 kg! Succsessfully removed with my stomach left untact! Also had galldladder and spleen removal, plus a number of liver metastatic NETs and a total histerectomy due to endometrial carcinoma ( unrelated to NET)(which was incidentally discovered during a PET scan). Out of the hospital on Feb.7. Recovering at home. Still have not seen my oncologist (March 7) to see what treatment I need.
Hello @pete1962 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found this forum. It is good to connect with others who have had this type of cancer. I'm sure you will find support and encouragement.
I have had three surgeries for NETs in the upper digestive tract over the past 20 years and my last surgery was about 7 years ago. I now have follow-up endoscopies as well as MRIs of the liver and pancreas.
I see that liver lesions were found on a scan in December. You mentioned that they were confirmed as NETs. I'm wondering how this was determined. Did you have a liver biopsy? Also, how are you feeling now?
Hello @pavlina60 and welcome to the NETs discussion on Mayo Connect. I appreciate you sharing your update after surgery. You had a lot of issues addressed during the surgery and it sounds like it went well.
How are you feeling now? Are you able to eat comfortably or do you have digestive issues?