Hi Kokomo, I'm sorry that your husband has had so many battles to fight.

This is a really rare and unusual differentiation of oral cancer that I don't think in 16 years we have seen here before. Since you are using the word throat cancer to describe it, a term which isn't the proper definition of it, I hope you will confirm with your doctors that this is indeed a small cell squamous cell carcinoma, and not the typical and very common squamous cell carcinoma that we see on the base of the tongue. The reason that I as you this, is that the two are very different in their response to treatments, and I do not wish to give you misinformation.

Even in the literature, this type of cancer is historically found not on the base of the tongue (although there are isolated reports of it in the oropharynx), but in the larynx, and even there it is only .5% of all laryngeal diagnosis. It is commonly associated with lung cancers, and when not in the lung it is only 3-5% of all small cell lung cancers in the body that are not lung based.

Your post doesn't say where you are being seen, nor what kind of work up he had for this, but I hope that it included scans of his lungs to confirm this is not an extension of something from there, and also p16 staining to confirm that this is not a typical HPV16 origin base of tongue cancer.

While we are discussing something that has unique issues retailed to it, I would like to add that small cell cancers (particularly lung) are in the group that is responding well the the new immunotherapy drugs called immune check point inhibitors. While there are many of these coming on the market, the two with current approvals for use are Opdivo (nivolumab) from BMS, and Keytruda (pembrolizumab)‎ from Merck. They both require some hefty insurance as they are expensive at this point in time, but perhaps they are worth of adding to his treatment tools.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.