PNET removed 2 years ago: Can it come back at another site?

Symptoms are the same..but chromogranin was 30 i will have pet scan next month

How much was your ki-67 plz??

When it spread how much chromogranin did you have?

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

Unfortunately the PNET’s usually come back at about 10 years, I was told. Mine are back but they are growing very, very slowly unlike the first one. So take it in stride and try not to worry too much. I know it’s difficult not to.

@snd
Certainly a better question for your Net Specialist, or medical team. Every case is different, so don't go by what any of us say, but I look at in half glass full approach. Now that you had them you will be monitored on regular intervals, and way more likely catch them in a very early stage, which should only be a maintenance issue, but again your Net Specialist will be able to give you the medical facts, which are the only ones you should rely on. You got this, we got you.

Thank you. My net specialists are oncologist surgeons at Stanford. And they said I don’t need another scan for three years because the nets are small and not growing. I participate in patient education seminars and have become somewhat of a “net specialist” myself. My endocrinologist doesn’t know a lot about PNET’s. There’s also a patient support group forming within the Seena Magowitz foundation. In September, they plan to start the neuroendocrine group. I’d love to have you join us. I am very optimistic like you but also a realist and I don’t write anything that is not information directly from a net specialist. This info about them growing back is a quote by Dr. Jeffery Norton, former chief of oncology at Stanford.

That's a very interesting and somewhat surprising approach by Stanford and very different from our experience when Norton did my husband's surgery 17 years ago. Even with stability the longest they would go between scans was one year and that was only after shorter intervals between scans.