Hey, folks:

I'm so happy to have found you all during this most difficult journey. My Dad is at home following a radical head/neck dissection with pec flap...I'm not sure of the staging. He was originially diagnosed with Stage I/II Squamous near his left tonsil last year. After 38 radiation treatments, he was cancer free for 3 months. Unfortunately, a new and more virulent tumor appeared virtually "next door" to the original site, and it was determined that surgery was the best option.
He had a 9 hour surgery on 8/15, and came home from the hospital on 8/30. He's currently on a PEG tube, and has a speech therapist visiting a few times per week.
My questions stem from conflicting advice given my Mom...My Dad's surgeon has given the go ahead to try and drink his nutrition through a straw, and supplement water via the PEG. His speech therapist indicates he's not ready for that yet, citing swallowing issues. Who should we listen to, and how long do most folks stay on the PEG before returning to eating whole food?
Also, my Dad is complaining of numbness in his tongue -- (I noticed a lot of you have mentioned this.) How long can he expect that to last?

Thanks to all of you for sharing your own stories with such dignity and caring.

Hi Alex,
That's a hard question. The Doc knows the usual time-frame for healing, and expects that one will have to push the envelope a bit to recover. The therapist sees your Dad more often than the Doc, and therefore knows Dad's current issues. So, notice the little things, i.e. is he swallowing his own saliva? Can he let a small ice chip or a popscicle melt on his tongue and swallow it without choking? The issue is aspiration pneumonia from breathing in what you should be swallowing. At any rate, I would have the therapist there the first time I tried it, just in case.

Andrea:
Thanks so much for getting back to me so quickly!
I understand my Dad has had success drinking sips of water, ice, et al...(I should have mentioned that he had a trach for the surgery, and that has almost healed over. I'm not sure how much of an issue that is, but he'd had some difficulty with mucus building up at the trach site.
I'll pass your note on to both my parents - thanks again for the information. Every little bit helps!
Take care -
Alex

Hello Alex, I don't know of any reason that he shouldn't take food by mouth unless he has a problem with choking. Andrea is correct aspiration pneumonia is a potential problem but most of us had minor choking/coughing after RT. If he can swallow ok most of the time then I say go for it. Swallowing will get better with time.

Hi Alex,
Andreas views are bang on target as if he can swallow his saliva without too many prolems and does not choke when sipping thru a straw he should do so. If the food passage is not used it may just narrow and close up as it happened in my case. Regarding the peg feed ( I have been on one for over four years now )- one can go on through one life with it. Its a matter of getting used to the fact that you will not be able to enjoy some of the stuff one used gorge on. I have been on a total liquid diet as I mentioned for over four years now, but thanks to a lot of innovations in my food - I am as healthy as I was before I contracted the cancer of the larynx. I still work out at the gym and have to get in my four km of running ebery morning. So you see - the peg is just what a normal person does -chew and swallow - in this case the food is liquidised and goes directly into the stomach.
I am no doctor but have been able to understand on how to cope with my peg in all these years.

I think he should swallow if he can.
______________________________________________
ANANTH- survivor of cancer of the larynx in stage 4 without any surgery but side effects because of an overdose of radiation. Diagnosed in April 2000 - declared cancer free in January 2004.

Mark, Ananth, Andrea:
Thanks for all this information! As it happens, my Dad's speech therapist is recommending a barium swallow, to make sure all is in order...We think if that goes well, he should be able to drink through his straw, and begin soft foods like jello, ice cream, etc...
I can't tell you how much I appreciate all your input, especially as you continue to face your own challenges. I'm thankful for your support, and that I found this website!
My good thoughts go with you all -

question: If you are swallowing your own saliva and some other liquids once in a while but are experiecneing too much paun to do a lot of other swallowing, are you still at risk of having your throat get closed up? I still have a sore spot in my mouth that seems reluctant to heal, even after all this time. My ENT has said it's not new cancer but it is definitely keeping me from eating much--even soft foods--and it also hurts to swallow, although I do swallow my own saliva(such as it is) and usually some sips of iced tea every day. Is that enough to keep me out of trouble with my throat closing up until the mouth pain goes away more?

post script-- Ananth, I am encouraged by the fact that you feel long term PEG tube use isn't so bad but I really hope to avoid that if I can.

Dear Nelie,
I am sure you will overcome all the obstacles that you are facing on date. There are so many motivating factors and the will to fight that makes things easier. If you are swallowing your saliva and sipping ice tea - even though you do feel th discomfort there are not too many chances of your food passge closing down. In case you are in a mood to eat some more solids then the iced tea - try sprying some xylocaine in your mouth - which will numb the area as it is a local anesthesia and totally safe. I would recommend you meet an oncologist in regard to the same. If what I have put down stands good to the doctor there is no reason why you must worry about a peg tube. However - if the peg does become a necessity - one gets used to it and it hardly visable to anyone in case you feel it makes you unhappy. I used to feel like freak but soon accepted what had hppened and I was the only one who would decide on how to feed and where. I really do not mind the wierd looks I get at public places when I take out the peg to have a drink or water or maybe a coke.
You will come good - Ihave no doubts on that score.
Tke care,
Ananth

one point I forgot to mention that the barium test is the right thing that the doctor has prescribed and it will give you the results and i am sure they will all be positive nd with nothing to worry about. All our prayers are there with your Dad and you.
Ananth