Hello Steven - welcome to the family, though I'm sure you would just as soon not have to be here (same for all of us). I'm sure you are also absolutely blown away with the seeming enormity of this new situation; we were too. That's where the forum family comes in; some who have already endured it and come out the other end of the tunnel stick around to help the new guys navigate the maze that you will soon be in.

Please don't consider further any of the alternative treatments out there on Dr Google. Snake oil cures have been around since time began and they don't work any better now than they did then. This oral cancer you have kills people very effectively, it isn't kind, it doesn't heal on it's own. Doctors are what cure it and they use surgery, radiation and chemo. I too have thought what you wrote above about big pharma, BUT when I was diagnosed I didn't waste one second getting my butt to the doctor to get started with treatment. So far it's worked (I'm 4 months out of treatment) and besides the dry throat symptoms and loss of about half my taste for food, life has returned to normal though I'm 40 pounds lighter.

No one has mentioned it yet but HPV16 is really a blessing rather than a curse. It responds to treatment much better than the non-HPV oral cancers do, so your long term survival is likely better. If you have cancer this is an STD that you actually want to have. We can leave the discussion of the implications of having HPV for another day if you decide to ask about it.

But in the meantime you have some mental preparation to do, preferably even before treatment begins. The first and most important thing is to realize you now have no control over a certain portion of your life. How will your body respond to treatment, how many side effects will you have, how much discomfort or outright pain will you have to endure. Here on the forum you will read about MANY who have undergone treatment. Some of them had a pretty rough go of it, but not everyone. I was very lucky, my journey through treatment wasn't bad at all. How will your journey go, who knows. It will be what it will be and everyone is different are two phrases you will hear over and over on the forum. There are a few things you can control and many that you can't. That is why Christine emphasized above to work on what you CAN control; ie your eating and hydration. You do have that in your sphere of control and if you do it right your journey will be easier. Do it wrong and you can easily end up in the hospital, malnourished, on IV feeding and worst of all your treatment delayed until you regain strength. That has happened to more than one person who didn't eat and drink enough. You will lose your taste during treatment; no taste means no appetite, so you won't want to eat. You will have to force yourself to eat. You may very well get down to where you are surviving on Ensure or Boost (I did), seven bottles per day is likely what the doctor will tell you. Don't scrimp on it, you can lose a lot of weight quickly; ask me how I know this.

Okay enough for now. Start reading the articles on the OCF website, they are very informative and will answer many of your questions. For your other questions ask them on the forum. We will help you get through this.

Again, welcome to the family.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good