I am now 5 years post treatment and having major problems eating. I constantly have food get stuck in my throat and often find myself coughing up half of what I have attempted to eat, depending on what I eat. I am at the point where I can only eat fatty meat and shell fish (oysters are the easiest) without much of a problem. I have also had 15 bouts of aspiration pnemonia in the past year and practically live on anti-biotics. I am scheduled to have a low profile button tube put in next month after I return from a trip I planned 6 months ago. Believe it or not I had to see 4 doctors before I found one who agreed that I was able to have a Button Tube in lieu of a Peg Tube. The first three were Gastro Doctors and the fourth was a Radiologist. Still haven't decided if I'll go through with having the tube inserted. The quality of life associated with not being able to eat anymore is not one I am having an easy time dealing with. I also continue to have constant throat pain which increases as the day goes on. By mid afternoon, I am hardly able to talk and I sound like I have a frog in my throat as my voice is extremely graspy. I'm wondering if the constant infections are related to my throat pain. None of my doctors really no for sure. Any thoughts or suggestions would be appreciated. Thanks.

My advice before I do anything else would be to schedule an appt with the nearest CCC (comprehensive cancer center) and let them evaluate you.

www.oralcancerfoundation.org/resources/cancer_centers.htm

Of course your first action must be as David suggests but I also want to suggest a another possibility and solution.

It sounds an awful lot like your throat lost or is losing its function and muscle tone so that choking becomes more regular. That you have suffered several bouts of aspiration pneumonia suggests that your swallowing mechanism is not quite working right and food and liquid is going into your lungs.

The pain in your throat which gets worse through the day might also be a sign of loss of tone from lack of use and be related in the same way that if you ran a marathon tomorrow without having practised first you would feel as if your legs were going to fall off.

Do you have any contact with a speech pathologist/therapist who would first of all check your swallowing ability with a modified barium swallow and also give you some exercises to maintain the swallowing ability you DO have. I would hope that if your doctors are talking about a feeding tube they have done the barium swallow?

A feeding tube might not necessarily mean that you have to stop eating, although this might indeed be the advice once you have been examined properly. You could potentially still eat the things that don't give you such a hard time or certain foods that a speech therapist might recommend without the added pressure of maintaining your nutrition.

I guess my advice is make sure a speech therapist is involved in your decsions.

A swallow study will be able to see whats going on when you eat. If you work with a speech pathologist they can assist you with not just the test but also with your food choices. Even with a feeding tube you can still lead a good life and you may still be able to eat. You might just need the tube to help to supplement your diet unless you are able to drink ensures.

Good luck!!!

I also was asperating alot. My doctors told me I would be on a feeding tube forever. I went to a Speech Pathalogist at a research facility and did alot of swallowing techniques which helped me tremendously. Once my throat and tongue got stronger we did a barium test. It was found that I had a bar or muscle if you will that was enlarged that was not letting all the food stay down. My ENT is doing a Ebdoscopy at the end of the month to shoot Botox into that muscle to relax it. I should know within 1 to 3 days if it works. I have been on a feeding tube for over a year and my goal is either to eat and drink again or perhaps become a patient of study to help other Oral Cancer patients. So for you I would definitly take ChristineB's advice. Good luck!

With 15 bouts of aspiration pneumonia you are a prime candidate for a feeding tube. Usually you can not get a button put in right away because the doctors want to use the tube so that the hole or stoma can fully heal and seal. The button needs to be measured within one half of one centimeter to work right. Until the stoma is completely formed, it's hard to measure it correctly. The tubes are one size fits all so that's what doctors prefer for the first one.
When you look for a SLP, you may consider one who also administers VITALSTIM electrical therapy. while it did not work for me, it has helped many others. Unfortunately, this is one condition that medical MJ does not help at all..
People die of pneumonia aspiration regularly - it is a big deal. Having a tube or button does not have to be permanent if you do regain your swallowing. Much as I advocate doing without a PEG if you can, if I were you, I'd get one.
Charm

Thanks for your responses. I have had the swallow study done on numerous occassions. I clearly have a swallowing disorder and have attempted to do the exercises that were perscribed. Unfortunately my throat hurts so bad by mid day I am unable to do the exercises in the afternoon and evening. I'm kinda hoping if I get the tube my throat will not hurt so bad and I can do the exercises diligently. I'll keep you posted. Thanks again.

Steven, I recall what it was like to feel as though one is gagging and not swallowing correctly, though my problem was nothing compared to yours. I really hope the tube will help.

Thinking of you.