 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Debbie, losing all your teeth is a huge thing. Only someone who has gone thru it can really understand how humiliating it is. I was scared to go to work without teeth too, but I did it and saw the good side of alot of people which made it easier. Ive been without teeth for almost 2 months now and have several more to go before Im allowed to get dentures. Thats the bad side of having teeth removed after radiation.
Its ok to be scared of the chemo and radiation, I did both. My situation was the same as yours but I also had a tumor in my cheek. It would have been a huge surgery even though I was only a Stage 1 in both spots. The chemo and radiation eliminated the cancer and for 7 months I was cancer free. There must have been a itty bitty cell hiding cuz it came back. Then I had surgery and it was only my cheek and was removed easily, not the radical surgery first discussed.
To be honest, radiation of your mouth isnt easy. It gradually builds up and even keeps working after you finish treatments. A couple things to remember is keep swallowing a few times per day and stretch your mouth open as wide as possible. No matter how difficult it gets doing these things will greatly help your recovery.
Its not fun having a port or PEG tube, but its worth it. They can both be placed during one surgery and it will make it so much easier to keep your weight stable. Thats very important even if you are overweight. Your body needs lots of extra nutrition and hydration to get thru this. Minimum 2500+ calories and 48 oz water daily. At one point my intake cuz of my milkshakes was over 6000 calories per day and that was for a few weeks. I still didnt gain an ounce cuz my body needed it to heal. Please dont feel ashamed about having something like this. It really is something you will need to get thru it. I have lots of tips for you about both if you need it.
Are you being treated at a cancer center? Did you get any other opinions? Keep the questions coming, we can help. Best part is we are here 24/7 and you get lots of opinions and different perspectives.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | 
