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New pNET so scared

Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (18)

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Profile picture for Sue (PNET) @suziktodd

Did they tell you what grade it is? 1, 2 or 3? Depending on where you’re located (state or country) the surgeon may follow the national (or international) guidelines and look at the size & grade, to determine if they will remove it or recommend surveillance.

Yours is .8 cm, which is smaller than mine which is 1.2 cm. I’ve been to 6 surgeons, and the consensus is surveillance with scans. Since I was waiting to get another procedure, I have just had that done on September 8 and now we will go back on November 19 and check again. I’ve had (2) CT scans, 1 PET scan, 1 biopsy, and lots of bloodwork plus genetic testing.

My tumor is on the middle top, and grade 1. I’m on the wait and watch surveillance list, and I still want it removed. Before I do, I’ve decided to see if I have the MEN1, NF1 or VHL gene before going doing so. You can ask your oncologist if you’re interested to see if he can refer you to genetic counseling. I had that appointment which was about 60 minutes. They explained everything. And then took two vials of blood and off the testing went. The turnaround time for that is three weeks. I’m still waiting for a results.

Hope this helps!

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Replies to "Did they tell you what grade it is? 1, 2 or 3? Depending on where you’re..."

Thank you for sharing your experience. I hope mine is similar and can be observed for a bit. However I will be in the dark for these two month not knowing the grade or type, can wait or not. So I’m really anxious and wonder what I should do.
Did you see 6 surgeons through 2nd opinion?