Glad you have an option on the table, and possibly of photodynamic therapy. Fight on!

Brendan, having options is always good!

Of course the quality of life issues should be a part of your consideration. Make certain not to include the fear of the unknown into that mix. You already went thru a major life changing surgery so I strongly feel you can make it thru this next round too.

In your considerations, please hear from someone who lives this everyday. Im speaking as someone who is permanently disfigured. Im not talking about having a scar on the wrist for a free flap, a neck dissection scar or crooked smile either! I am missing half of my jaw and I cant hide my disfigurement with clothing or makeup. Children were afraid of me during my first year before the reconstructive surgeries. But even now people stare. The first year was the hardest! I have many quality of life issues which would make most other people in my situation hide in the house. I am missing all my teeth, will never be able to have dentures. I will depend on a feeding tube for 50-75% of my nutrition for life since Im too stubborn to drink those awful ensures. I have swallowing issues that makes me choke on even yogurt sometimes. Im weak and cant physically lift more than 15 pounds. I also tired very easily, my stamina levels are always low. I could go on and on about whats wrong with me after Ive had OC 3 times within 3 years, but Im sure by now you get the picture.

Now I will tell you about why the above paragraph really doesnt factor into things. I am alive! I help thousands of people. I do not sit around feeling sorry for myself and considering all the things I mentioned above. My life is a very good one even with limitations. Maybe others wouldnt see it that way but Ive always been a very independent, upbeat and positive person so my point of view is that Im very fortunate. Looks are superficial and its what is inside that is important. Looks fade and change with time, mine were taken away from me when my jaw was removed but there isnt anything or anyone in the world who can take away whats inside. Inside, I am still the same person I always was before I got sick.

So instead of thinking about "what if" and thinking of all the life altering changes that "may" happen.... think about what kind of person you are and if you can handle persevering thru this. What I know of you says YES YOU CAN!!!! If I didnt see you as a fighter you wouldnt have gone thru everything you already did. While I do see your wife's concern, the final decision is yours and yours alone. You came this far, please dont quit before you even try to get thru it. Being alive and living with handicaps and disabilities can still give you a very worthwhile life full of happy things.

Best wishes!!!!

Awesome - so glad they've come up with a plan... Ditto what someone above said... Fight on!

Many thanks for all the responses, especially ChristineB - it helps me put things in perspective. Apart from the pain,discomfort,deep anxiety etc that this condition brings I do feel cheated that I won't see and help my 4 year-old daughter grow up or enjoy another 30 years with my wife, when the true cause of my disease cannot be determined.
I know I've got to try and stay positive and this forum has been a true support for that.

Brendan, please dont determine your fate already! Please try to get thru some type of treatment. Dont ever give up before you try!

Several years ago when I was diagnosed with "the big one", Stage IV needing my jaw removed I was ready to refused treatment. Being a single mother, I was all my 2 teenage children had. There father had chose not to be involved with raising them many years ago. I was beside myself not knowing what would be the best decision to make for my children. My mindset was that if I was just going to die anyway, why not prepare my children for it while I was still relatively 'healthy'. The members of the forum convinced me to not give in before I gave it a try. By resigning myself to quit before the race even started I was signing my own death sentence. I asked Brian Hill if he knew of any 3 time survivors as I had never heard of even one. His response was honest and accurate, he said "yes there are some 3 timers out there, not many but there are some." Between that reply and the forum members I decided I would attempt to survive the mandibulectomy. Even though it left me disfigured, with many medical issues I consider myself to be very fortunate. I am alive and mostly well and able to help others. I go all over speaking at schools about anti-tobacco. I volunteer many hours every single day on the forum and give speeches at OCF walks about oral cancer. So you see even with handicaps I lead a very good productive life.

If I can do this.... so can YOU! I am a firm believer in this. I know it will not be easy but nothing that is worthwhile in life is ever easy. It does not matter the reason you got this horrible disease, you still got it. The treatment plan would not be different at all even if you did know. There are many people out there (I think about 10%) who dont know what caused their OC. You think knowing would make things easier, I dont. For me, I know what caused mine...I smoked and it was my own fault that I look like this. I did it to myself with my awful habit. That can play a real guilt trip on a person. I think you are lucky that you dont know.

Ask your doc for pain meds. Seek out a therapist or counselor to help you with the anxiety. You probably should take some anxiety meds to help take the edge off. I probably should have but I was too busy during the 2 months between diagnosis and the surgery date.

After diagnosis, I was preparing to die so I wrote letters to my children (should have made videos but this was 4 years ago), paid up all the bills, I was working so worked lots of overtime to have extra money for my children, and lastly I threw a party and made memories. My son had his 20th birthday 2 days before my surgery. I selected the surgery date and told both of my children we were going to have one heck of a party and we did. I made certain to spend all the 2 months making memories with my children, they never saw me sad or upset, they saw me happy and we had a great time. I figured if I was going to die they would already remember their mother as a happy strong person. I was even making jokes with my son while I was being prepped for the surgery. I was wheeled away smiling, as soon as my bed left the room where my son was I burst into tears and cried all the way to the OR. The rest is history. Its 4 years later and Im doing as well as I possibly can.

Im begging you to consider all the options and treatment plans and choose the one that gives you the best chance to eliminate the cancer. I know how hard this decision is but you can do it. I will help you thru every step of this if you need me to.

Best wishes!

You are a true inspiration Christine and I hope Brendan that her passion and sincerity has at least given you some hope in taking on the beast head-on and giving it all you got.

I also have to say mind set plays an important role in healing, recovery and fighting this disease if you allow it to defeat your outlook, it's already won half the battle! Live day to day - look towards a future - and let your mind and body know you WANT to be there - also look into photodynamic therapy - someone on Facebook mentioned it and I read the attached article it has great potential see if your hospital has a clinical trial for it.

I am by no means a radiation expert but has anyone considered IMPT, Intensity Modulated Proton Therapy to attack that tumor? Years back I read a very technical article on IMPT and what I gathered was it was designed to treat hard to reach tumors (like brain) and the beam was delivered like a smart bomb in that it would do no damage going in or out but would conform to the tumor and destroy it without damaging surrounding tissues.

About 10 places in the U.S. has Proton treatment, IMPT, like MD Anderson. Not too many studies, but more hospitals are looking into it or have on order, and seems this may be the future Tx. Thanks David.

Don't know if they have this across the pond but SBRT (stereotactic body radiotherapy) is used here. It is a 3D real-time modeling radiation protocol. This is used as much as laser knife.