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NET tumor of pancreas (1 cm) diagnosed
Neuroendocrine Tumors (NETs) | Last Active: Jul 28 7:48pm | Replies (52)Comment receiving replies
Thank you so much for sharing. It is comforting to me that your Drs at Mayo are saying the same thing as my Dr did here; to wait and watch. My tumor is in the head. I will have my biopsy this Wednesday and am nervous about it. After that I will try for a second opinion. I'm not sure how to do that, but I'll figure it out. My Dr said to wait a year and then have another CT scan. He didn't mention anything about doing any more lab work. My CA 19-9, which was done before I saw the surgeon, was normal (18). I am a detailed oriented and nervous type; I always need a plan. This will be on my mind for the next year if I have to wait that long for the tumor to be monitored again. I think I will ask if they will do another CT in 6 mos. vs a year. I just feel like there wasn't that much concern for urgency on this from the Drs and this isn't a big deal to anyone but me!
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I totally agree with you on the seemingly lack of concern or urgency. It would be nice to have an option of how long of time between the monitoring of the tumor. One year seems like a long time to wait and it certainly doesn't give a person much peace of mind not knowing. I've always heard if you find the cancer in the early stages, before it spreads, your outlook is much better than if it isn't found until it is larger or spreading. That is why the, "wait and see" approach is so frightening, especially dealing with the pancreas. Also the fact that PNET is so rare: 2% is a pretty low margin of people with this particular cancer. It makes one question why the doctors feel comfortable with letting it just sit with no medical intervention. There are likely few comparable studies, given that only 2% of pancreatic cancers are neuroendocrine. I guess we have to be our own advocates and possibly become a pain in their side to get the reassurance and testing that gives us some peace of mind. The very best to you on your journey. It's good to know other's feel apprehensive when given the "wait" technique.