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.
Even with normal chromogranin Pnet can be found??
It was 9.8%
It was 819 back then
@dakshapatel, I'm sorry to hear that the cancer has spread. What treatment options have been recommended to you? How are you doing?
I found your comment very useful. Well be looking into a NET specialist and already requested to join the Facebook group. Thank you so much
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.
My PNET was found 6 years ago and on 10/1/2019 I had Whipple surgery. I have scans every six months because I drive my oncologist crazy. I will NOT wait a year in between scans The earlier any NET is found is to your advantage. That’s my opinion.