We have never had a patient come here with this very poorly understood pathology. Neuroendocrine cancers happen in many part of the body and the cervical neck is one of the least likely areas for them to occur, though they are sometimes associated in parathyroid syndromes.

While there are many here that will be happy to open a dialog with you about emotional and treatment issues, I do not think that there will be a poster that has had a similar rare cancer that can give you a personal journey type of perspective.

Even among many doctors these are not well understood. There is significant disagreement even about their classifications. The main source for information is a web site http://www.netipedia.org which is designed for doctors to exchange ideas, review the most current peer reviewed work related to them. The information it contains is daunting, and you may or may not find it of help.

These are very different from the vast majority of the cancers that fall into the oral cancer group, so even those of us with a scientific bent on this particular board will only be of moderate help. You are certainly welcome here, as the emotional journey in cancer is a roller coaster ride, which we do understand and can be supportive in. I do not believe there is a support group for these rare cancers, and I have spent quit a bit of time asking on your behalf with no good results. There is a rare cancers organization, but I do not believe that hey have an online support group, and even there you will find most people different from a disease stand point. (There are literally hundreds of minor cancers that are considered "rare").

I wish you the best in the future and hope you will avail yourself of the emotional support here. I am just sorry that we are so poorly equipped to help you with life experiences that will be disease specific.