New here.
My husband was diagnosed with large cell undifferentiated neuroendocrine cancer of the throat with lymph nodes involved on both sides.
Has anyone else here ever heard or now anything about this kind of throat cancer?

Sorry, have not heard of this before but if its throat cancer Im sure we will be able to help you. The treatments could include surgery, radiation with or without chemo. Best thing to do is head to a large NCI comprehensive cancer center. Here is a list. Good luck!

NCI Cancer Centers

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.

Thank you so much for your support and kind words. I have been poring over the internet for months trying to find out exactly what we are dealing with in future but to no avail.
My husband is stubborn and scared.
He hasn't given up but has indeed given up on doctors and appointments... no more scopes, scans, or tests. Refuses surgery and anything else.
Radiation about did him in and this cancer is so rare that no one can give us (me) any answers.
His treatment ended in August and he says he'd rather not know anything more.
Still on the G-tube and can't swallow but we are walking through with our eyes closed.
His attitude is good and he's back at work and not focusing on the negative.
Hanging in
It's HIS cancer so I sit by, wear beige, and keep my mouth shut

Lucy!

Hello my beige wearing friend, as a frequent shopper of The Gap and Old Navy let me welcome you to these forums as a fellow beige lover...but not really.

Where these forums may not be able to answer specifics about your husbands cancer, we can relate to him about after treatment issues caused by radiation, drugs etc. We'll also be able to provide a patients point of view in dealing with the psychological and emotional impact of what he's been through and where he's at now. Same goes for you my dear, the caregivers on these forums are "amazing" and can relate to you and your struggles.

We may be good for fashion advice too, it's spring! darker skinned? go crazy with bright colors, lighter skinned, pastels!

I have no clue actually, but it sounded like something I heard off of Queer Eye for the Straight Guy


Keep your chin up!

Eric

HI there Brian's right - so's Eric - I would like to say some of us - most if us can help with the fall out of treatment. (I'd say 75 percent here have had rads - and a peg, some are on permanent feeding tubes, some temporary - some like myself couldn't use theirs so it was in and out. We can help with nutrition, etc... Hugs and welcome...

Hi Lucy - it pains me to read about what your husband is going through, and you at his side. Stubborn and scared... that sums it up and my heart goes out to both of you.

Shall I assume that you've consulted at a CCC as Christine suggest? Or is that assuming too much?

As others have said, we can all relate emotionally even if the specifics of his case are unique. Please don't give up. Let us know how we can help and we will.