Hello All,
My father 65 years has been diagnosed with a stage IV SCC of the basal tongue. Because of previous radiation which was concurrent with a neck dissection for an SCC neck mass with lymph nodes involved, he is not a "good" candidate for radiation/chemo as a sole treatment. He is currently doing Chemo with a scheduled total gloss surgery followed by more post-op radiation. There is a discussion about a laryngectomy with the glossectomy because of the risk of aspiration, and maybe to reduce the risk of recurrence. The larynx is disease free right now. For any of you that have had a total glossectomy, what was the consideration for a laryngectomy as well? I've searched glossectomy and read through all of your stories. Lot's of good information, but wasn't able to find anything that really addressed this question. We are being treated at MD Anderson in Houston. Please, any insight would be appreacited.

I would bet by noon tomorrow you will have some questions answered, Our leader Brian is very up on mot surgeries and procedures and there are a few more up on it too. I been thru the mill with mine too but I must have suffered barin melt down, LOL Welcomeee to our home awat from home and use it to ask or inform us of things you know and we might not. Good luck to your Dad. Jim

Good morning Jason,
I'm glad you found this site. I've found some very encouraging posts. This is going to be very difficult but with the support of his loving family and friends your Dad will get through this. He's an incredibly strong man. See you soon.

Love, Ciocia Elizabeth

I already feel so bless to have all your help. This is how I will get through this deep dark valley.

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

Eagles,

Sorry that you have a recurrence. MDA is one of the county's top Head and Neck cancer centers so I'm sure they will explain all their reasons. Just write all your questions down and be prepared for the next visit. There are many current posters that may have some experience to share as well.

I think that Eileen has described the results better than I can, since while I am familiar with the issues, she has lived it. Permanent removal of any anatomical feature of your body deserves the serious consideration that you are giving it. I would ask the MDACC docs to describe to you in detail the pros and cons of the procedure. As a MDACC alumni myself, I have lot of faith in an institution that is top rated in the US. Having said that, I never let any one do anything to me, until I am at the point where I understand the pluses and minuses completely. Make them tell you everything, including all the long term quality of life issues that my be improved or exacerbated by this procedure.

In my previous post, I only addressed the eating and swallowing issues of being a laryngectome. Here are some other things to think about. Besides losing most of your sense of smell which can effect taste, you will never be able to swim or participate in water sports again. If you fall off the boat, you will drown. You will never sing again. There must be others but I can't think of them now.

Have they discussed whether you would have a TEP. If this is what they plan, you need to discuss the failure rate and what the backup plan is. 5 years after I had my surgery, my surgeon told me the failure rate is 45% on people who have had radiation. The TEP can leak around the prosthessis and then you wind up on a PEG tube maybe forever or until they can close or repair the TEP. The prosthesis needs to be changed when it starts leaking through the center. This means you start leaking liquids into your lungs usually causing an infection. My prosthesis only last 3 months but most peoples last 6 mo to a year.

They also usually have to take an artery from your arm to form a flap and then a piece of skin from the leg, to cover the arm or they can use cadaver skin for the arm. I did not need this, but am told it is the worse part of the operation.

I've been on this board since May of 2002 and do not remember anyone who had a total glossectomy also having a larygetcomy at the same time to avoid asperation. I'd discuss the pros and cons of this very thoroughly with the doctors before agreeing to this surgery.

Let me know if you have any other questions. Have you emailed Miskate? She is not on the baord on a regular basis.

Take care,
Eileen