I was diagnosed with SCC of the lateral tongue last summer and had surgery to remove the nickel-sized lesion in November of 2002. While my ENT oncologist thought they got all of the growth he was not conclusive about the surgical margins available short of needing reconstruction.

I now have a very small reoccurence in the same area. Whether this is new or missed cells I am not sure. Radiation was recommended post-surgery but the predental consultation suggested the removal of all teeth and we decided then to just monitor it often. Here we are again.

IMRT is now encouraged for the new growth and I am of course immersed in the confusion over side effects. My greatest concern is will there be enough saliva remaining to support dentures? I am processing the other information to be only temporary and will eventually return to "normal".

Mentally, I think I am doing well. If this is what my Greater Power (God) needs me to do in order that I may continue to carry out His purpose for me then I am okay to do this for Him. I am HIV+ since 1990 and have learned that with most of these issues that the personal growth and the insight gained through these not-so-nice experiences leave me a much better, more compassionate individual and that is not a bad thing.

I would appreciate any insight as to how to minimize side effects and any other comments that those of you who have gone before me may offer.

With hope,
Russ

Welcome to a great place.......I admire you`re courage and mental outlook.......as His Holiness, the Dalai Lama puts it, we don`t grow without adversity, and our enemies are out best friends, seemed you`ve learned those lessons well........you`ll find lots of encouragement and answers here............Dee

Hi Russ, You have a great outlook on this re-occurance. It seems like you caught it early from reading your post. I am a fairly new member who is waiting to start my radiation after a neck disection. I want to wish you good luck with your treatment in whatever way you decide to go. Dan

Russ, while you are probably aware of this, I just want to be sure that you discuss this with your doctors. Radiation treatments, even the lower dose IMRT, will beat up your immune system to some extent. That has consequences for your other medical issues. Obviously you are on some meds for you HIV and you've been able to stay ahead of that for a decade. Please be sure that the doctors that who are treating you for this oral cancer are well interfaced with those treating/monitoring you for the HIV. You have unique issues medically, that must be considered by both types of physicians.

I am most encouraged by all of your concern and caring. Rest assured I wish to return your support in any way I may...Thank you all. It seems like this will be a "site" where one can turn for a number of support issues rather physical, mental or both. Thank a Higher Power fot that. Brian, from what I can tell at this stage of early involvement, kudos for your care and concern in making a "modern" communication venue obviously workable. Not all have been so accomplished when it comes to the Internet.

Please, I do not consider my situation "unique". Just another consideration. I have already estabalished good communications between all health care professionals involved in my care. I am certain the removal of my teeth is predicated by my HIV status. Better now than later. However, vanity is an issue with me personally...why right?
Don't really know...I just want to be able to smile comfortably again. Listen to foolish me...as if a smile from the heart isn't enough?

I have all your comments and suggestions and will jump into action Tuesday AM ready to get answers. I guess that is the best I may do right now.

I am delighted to have found you all and please allow me to continue our discussions. You have already helped me tremendously and I am most willing to offer the same in return in any way I may.

Welcome to ICTRUMBULL...in just a short moment I know you have found "home".

Bless you all....and have a great Labor Day....
Russ

Brian...thanks for your comments and suggestions. They have been instrumental in my thinking. It is obvious you know of which you speak.

I have a premininary appointment next week, after the extractions, to meet with the radiation oncologist relative to the pre-radiation schedule. One of the things on my list of things to speak to him about is a constant interface between both my infectious disease MD and my ENT oncologist, a man for whom I have great respect. He has been sensational in every encounter. Loyola, as you may know, is a teaching hospital, and I have good faith in his resident team as well. I will make it clear that they should get copied on all relative testing and I will ask those questions each time we draw to make sure. Thanks for the heads up...I have some room to spare but no a whole lot.

Also will have a good discussion on the PEG. I really don't want it put in unless absolutely necessary and since we are not shooting the back of the tongue or the neck and not using chemo I am hoping...with determination and ignoring pain, I will be able to swallow my medications...as long as I am able. It is only twice a day. I can always crush and dissolve them if that seems workable. It is an "ick" but with minimal taste...I shouldn't notice. Be there done that.
Years ago we used to crush Videx because the "chewable" tablet (the size of a fifty cent piece) was most certainly not chewable. We mixed it in chocolate milk and bingo...down. In humor, then we waited for the greenapple quicksteps!!!

What a wonderful venue you have created here and I for one applaud you for that. Don't know if you farm out your web construction but if so...kudos to them. Everything works so smoothly.

I am here...postive about what is to occur. I think I have a good understanding of what is to take place and I am ready to get going so it gets over. I have more life to live.

Let me know if there is anything I may do for the cause along the way so that the person that follows me has the same fighting chance...better than the same if possible.

Stay with me....please
Be proud of what you have done here....
Russ

While I thank you for the compliments on the site, as you have already come to learn, I have done the easy part

Brian, it really works well and the appearance is clean and understandable. Again, atta boys to both you and Chester. And big atta boys to all who contribute. Thanks, I am just beginning and I already am comforted just knowing you all are here.