Hi Jason,
I am a total larygectomee but I had no surgery on my tongue so can't relate to that. Look for posts from MISKATE and read her blog in the blog section.

I originally had an unknown primary in 1997 and had a neck disection and radiation. The radiation left me with difficulties in swallowing anything that was not moist and choking on many foods. I had minor aspiration problems but more often than not just coughed up whatever I couldn't properly swallow. When I had a new occurence in 2001 with a minor tumor on the larynx, they had to do a total laryngectomy because at that time they did not re-eradiate. The one good thing that came out of this surgery is that I can now eat many foods I couldn't eat before since I no longer can get stuff caught in the epiglottis or asperate into the lungs. Your mouth goes straight to your stomach. I do on occasion get food caught in the esaphagis but this is not a problem since it doesn't affect your breathing and can be massaged back up. You will however lose all or most of your sense of smell.

I hope my description of the eating scenario gives you some insight into why your doctors may be suggesting the laryngectomy. Do they think you will be able to speak after the glossectomy? If yes, what type of device will you use if you have the total laryngectomy? It's an ugly decision to have to make. If you decide not to have the laryngectomy now, can they do it later?

Take care,
Eileen


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Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I