Hello,
I'm a first timer to the forum, so I apologize if I'm "out of order" posting here as opposed to some other place.
I've read the survivor forum for years under various topics - e.g. mucositis. My quick background - SCC of gingiva in 2004 (non smoker, non drinker) 50's, diabetic, 2 recurrences (pre-radiation)- surgeries, radiation (entire oral cavity - IMRT 66 gy completed 18 months ago, dry mouth, trismus, couple biopsies (inflammation), take various meds including over the counter anti-inflammation/pain meds . My main problem is oral pain post radiation (18 months after radiation) - everthing I put in my mouth hurts - medication (e.g. Nystatin burns), most food burns (got to wash down with water asap), can only drink water/tea; I'm very dry always drinking water. My docs - ENT and radiation oncologist had claimed I was a "slow healer" but now are not so sure (they've called it mucositis but I wonder if radiation just destroyed my oral tissue permanently). Also when I talk alot - my left side (where I have up/lower teeth left) really gets raw and more pain (also have alot of yellow spots that come and go - treat with Nystatin liquid - helps but doesn't solve). I see very few comments about oral pain after oral radiation when completed even just months ago - any thoughts on my facts/issue (especially the pain) would be appreciated.

Hello Jim04,

I don't think your out of order posting here, just looks like you should start your own thread so it doesn't get lost, right here in Introductions. You're doing good! You found the board and people who can help! I'm a caregiver wannabee, so I don't know how to help with the pain issues. But I believe someone will! Welcome to the board Jim!

Jim,

What kind of surgery did you have. As far as the Rad Tx, it depends on where they radiated and your bodies' particular reaction to that. None of us are exactly the same as you can imagine. I didn't have any surgery and I am now 19 mos post Tx and I am faring much better than you sound so perhaps your surgery or your beam position and intensity to a specific region is the cause.

Thanks for the response. I had primary surgery on lower right side - removed about 4 lower back teeth, shaved jaw and did a tongue flap to cover - I had no real residual pain after surgeries - all from radiation (and yes brushing my teeth and using Therabite and when hitting tongue right side also causes real pain). I had IMRT 33 days/treatments to entire oral cavity (both sides of mouth) - from parotids (caught part of them) down to my adam's apple; I also had amifostine injections during treatment (supposed to decrease residual mucositis).

Thanks for the response. I would appreciate any info. on how to create a new "thread" in the forum.

From the message board's home page, click on the forum where you want to start a new topic. You'll get a list of all the topics started so far. At the very top, on the left, is a tab that says New Topic. Click on that and start writing, then click the Submit button when you are done. That will put your new topic at the top of the forum.

-- Leslie

Hello Jim and welcome.

You should read the first Forum (New posters read this first) which is for new members. Brian put this together and it should tell you all you need to know to learn how to use the forum.

Jerry

HI Brian -
Of course, we are constantly concerned, just as everyone that has faced this cancer is, but the RO told us that he felt the second or third cancer would have occurred anyway, even if he had IMRT treatment at the original site. At his recent appt. with his oral surgeon here, she told him his mouth hasn't looked this good in a long time, which was encouraging. He is constantly monitored by an oncologist, an ENT, his dentist, and an oral surgeon here, plus two top notch ENTs up at Shands in Gainesville, Florida. I remember his ENT here telling us that he has one patient who has had something like 40 or 50 surgeries for oral cancers over a period of many years (wish I had a better memory and could recall more details) and in her 70s (?), finally quit smoking. (my husband never smoked or has any of the risk factors) I guess each case has to be taken individually, and treatment offered to meet the needs of the patient. I appreciate your concerns, which are certainly legitimate, but since his first cancer over 6 years ago, we think we are on the right path for prevention (we pray) of recurrences, thru various treatments recommended for him. Again, thanks for your concerns.....Warmly, JaneP

I don't understand why he's only had surgery. Woudn't the radiation have prevented the reoccurances from ever have happening?

Kate,

the goal of rad is to kill the existing cancer where it is and hopefully preventing from spreading. Since no one knows why we get the cancer in the first place, it can't prevent a reoccurrence.