NET in body of pancreas: What are my treatment options?

Posted by milagro45pr @milagro45pr, Jan 25, 2023

I have two tumors in body of pancreas
1.4 cm and a 6 mm. One was biopsies and apparently it’s a NET. Was told to wait it out or could have surgery because they could not really tell what it is after two failed biopsies but one of the samples they found Neuroendocrine tumor cells. No PET scan was offered. I have being having stomach pain and pain around my hall bladder and liver area. MRI doesn’t show anything but I’m scared. What if it has spread and they don’t know. I opted for surgery will be schedule sometime in March. Should I ask for a PET scan? Please help.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

kim1965 | @kim1965 | Jan 26, 2023

My wife has similar mass on her pancreas, we are 9 cycles into chemotherapy (pill version) that has greatly reduced the tumors on pancreas and she also had many spots on her liver. The liver spots used to be too numerous to operate, but know all of them much smaller, she has surgery on March 1st. Our prognosis is good, what you will hear from everyone that has dealt with NET, is to get a NET specialist to help you with your fight. You need a multidisciplinary team to decide the best course of action for you. I’m not a doctor, I’m concerned what you have shared doesn’t sound like they very familiar with NET. I wish you the best, let us know how we can help further.

Colleen Young, Connect Director | @colleenyoung | Feb 10, 2023

Hi @milagro45pr, I wanted to check in with you.
You may be interested in this related discussion that @outlawcancer started:
- Surgery of PNET https://connect.mayoclinic.org/discussion/surgery-of-pnet/

I agree with @kim1965 that it is important to speak with a cancer team with NETs experience. Have you made a decision about getting surgery?

milagro45pr | @milagro45pr | Feb 10, 2023

In reply to @colleenyoung "Hi @milagro45pr, I wanted to check in with you. You may be interested in this related..." + (show)

I will be getting a distal with splenectomy on March 10.

outlawcancer | @outlawcancer | Feb 11, 2023

In reply to @milagro45pr "I will be getting a distal with splenectomy on March 10." + (show)

@milagro45pr i was diagnosed with PNET about 3.5 months ago. I went through 3 doctors through Kaiser. I then paid out of pocket to see a fourth doctor through city of hope. All 4 agreed that same procedure must be done in order to remove the tumor. Distal and spleenectomy. Do as much research as you can on the procedure. If you can stomach it, there are a few YouTube videos out there showing the process. Good luck to you , hang In there we shall get though this together.

pavlina60 | @pavlina60 | Feb 12, 2023

@milagro45pr - I was diagnosed with huge PNET. Had surgery on Feb.1. Ended up with removing the tumor, distal pancreatectomy, spleenectomy and gall bladder removal plus a few meta spots on the liver. Simultaneously I had a total hysterectomy, which complicated my surgery. Stayed at the hospital for a week and am already home.
You and your doctor should definitely ask for Ga Dotatate PET scan, wchich is very selective for PNETs!

htam4 | @htam4 | Jun 16 8:38pm

In reply to @pavlina60 "@milagro45pr - I was diagnosed with huge PNET. Had surgery on Feb.1. Ended up with removing..." + (show)

May I know more about the reactions now? I am considering for the PNET tumor removal which 1.1 cm on the head.

pavlina60 | @pavlina60 | Jun 16 9:29pm

In reply to @htam4 "May I know more about the reactions now? I am considering for the PNET tumor removal..." + (show)

My tumor was around the tail of the pancreas, so I had distal pancreatectomy and splenectomy. As a result I received multiple vaccines. The treatment post surgery involves a drug Somatuline/Lanreotide which damages the gall bladder, so it was removed as well. Post surgery I have to take Creon (mixture of enzymes) to help with digestion, as my pancreas ( what was left of it) could not produce enough, and the lack of gallbladder , as well. I also started having high blood sugar as a result of missing pancreas and as a side effect of Lanreotide injections. But I am not on medication for that yet!
Your tumor seems small enough so most likely surgery will be laparoscopic/robotic. The surgeon who did my operation (I live in Syracuse,NY), Dr.Dhir does robotic Whipple procedure. I was not a candidate, since mine was huge, and I also had endometrial cancer and had simultaneous surgery for both. Let me know if you have more questions, I will be happy to answer, if I could! As far as diet - small meals more often, nothing fried, no tomatoes, watermelon, aged cheeses. Lots of protein, but no red meat. Good luck with your surgery! It will be OK! God bless!🦓💜