PNET removed 2 years ago: Can it come back at another site?
Hi ..i did distal pancréatectomy with splectomy since 2 years..it was Pnet grade 2 ..last year my MRI was clean..now since 2 week minimum i feel dizzi stomach pain and tachycardia with too much bowel mouvement..has anyone experienced same symptoms..my Mri is next month..i did chromogranin and im waiting for the results
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Plz help me im 32 y and so scared
It’s likely that you’re in emotional shock and you should immediately seek mental health help. In addition to that get to an oncologist that specializes in Pancreas Cancer not a regular oncologist. God bless you and good luck.
@snd, I can imagine you are frightened. Whenever new symptoms appear, it's easy to jump to the conclusion that the cancer has returned. That's a normal reaction. It sounds like you contacted your cancer team and that you are now getting testing done. Have you heard back about the results of the chromogranin A test? Have you symptoms changed?
I had the same and it spread to my lymph nodes and liver
I had most my pancreas removed as well as spleen and gallbladder in 2020. In 2023 they found a small one in my liver and within 7 months I had more than 20 in my liver, a new one on what was left of my pancreas, also spread to Peritoneum, Prostate and bone. I see above someone mentioned a Pancreas cancer specialist, but what you really need is a NET Specialist. I started Lanreotide after finding the first in my liver. It did not seem to slow progression, but did stop tachycardia issues. After 14 injections of Lanreotide my NET Specialist recommended CapTem and after 3 cycles all measurable tumors shrank, some by half. Just finished my 5 cycle yesterday and my next scan is scheduled for Jan 28th and hoping for more shrinkage. Unfortunately most Neuroendocrine cancers spread, but it is typically slow and if you get to a NET Specialist they will tell you it's manageable. There is also a group on facebook that I have found very helpful/informative. On FB search neuroendocrine cancer ronny allan's group, everyone talks about their own experiences. You will find, eveyone is different and has different experiences/results, but very hopeful
I’m sorry you have to deal with this and are so scared. But I’m afraid yes it can come back. That’s why quarterly scans for the first year at least and continued imaging is so important. If you haven’t already, you should have a net specialist following you. Also have you had a gallium or copper pet scan? That is a scan specific to nets only and is used to see if there are tumors elsewhere that can’t be picked up by MRI.
Symptoms are the same..but chromogranin was 30 i will have pet scan next month
After how much time??..what about symptoms??
How much was your ki-67 plz??
When it spread how much chromogranin did you have?