I know this has been addressed many times before, and I have read a couple of excellent posts by Brian and Gary, also on other forums where we should not look at stats, good or not, the odds of recurrence should be viewed as 50/50. I have also been encouraged by many, including my docs, SW, etc, to just live my life, I cannot control a recurrence.

There are times of weakness, I am a university educated RN, and my analytical mind goes googling for what is usually stats in my favour to make me feel better. I often refer to Brian's reference in the NEJM about 80% 5Y survival for HPV tonsil Ca survivors.

Then I came across a study in 2002 that isolated 14 HPV stage 4 tonsil Ca survivors. 12 lived to 3y, then it dropped to 7 at 4y. Only 2 were alive at 5y.
Then there is also the recent study where matted nodes were independent of all factors for survival, 7 of the 11 HPV+ with matted nodes died of metastatic disease. I might be wrong, and now I don't want to ask my ENT, but I think I might have had 2 matted nodes upon diagnosis. I remember him saying I had one node behind another.

Those 2 studies do not sound like 80%. I mean there is no guarantee I will live another 6 months, but the unlikelihood of even making 5y when I thought I had a good chance is depressing.

These mind games are driving me nuts. I need to ignore the internet. At least I have started counselling with a SW, and I see a psychiatrist in April.
I was always a big planner, and switching that to living in the moment is tough.

Sorry, I'm venting, and I hope what I've posted does not bring anyone down.

Bless you all.

Roger, your post is a common concern among survivors. Getting cancer is one way to force us to face our own mortality. After everything you have been thru its only normal to be afraid. I guess with time you will begin to move past this. Seeing a therapist should be helpful with this. I know how hard it is but for your own good, try to think positively. You are now a cancer survivor so my suggestion would be to focus on living your life instead of dwelling on negative things. It is something beyond your control and to worry about things you can not change is a waste of time and energy. This is why I always advise survivors to go out and to live their lives. Cancer is like a thief, it will steal your time away from you.

Statistics are just numbers. To me they mean nothing. I have beat the odds and I know how lucky I am to still be alive. How many 3 time oral cancer survivors are out there? Not many! If I had paid attention to the numbers and had seen how slim my chances were I could have negatively affected my outcome. I am a firm believer in positive thinking. Of course this is just my idea, I dont think there is scientific proof that positive thinking works. For me it does.

Go out and live your life, dont worry about your odds. If it would come back then it would need to be dealt with. Worrying wont help make you feel better. Especially worrying about something that may never happen. Of course we all like to be prepared for things but worrying about getting sick again is unproductive. It makes you focus on "what if" instead of getting out there and living a good happy life. Everything in life is a choice, hope you choose to move past this and be happy.

Roger - if you allow the "what-ifs" to spend too much time with you, it will stress you out and stress can make anyone physically and emotionally sick in itself, which takes away from your body the strength it needs to heal and be healthy. So if you can choose (and it is a choice) to at least start with imposing a time limit for worrying or if you want to think of it as having compassion for yourself, then you will begin to spend more time on the positive aspects of healing and will feel better. We all need help to do this at some time or other. Seeing a therapist is a good idea or perhaps you can check with your doctor to see if he feels you could use meds to help in getting you to a better place emotionally. There are many things in life we cannot change, but we can change our attitudes. It takes practice, little by little. All you have to do is choose to take the first steps. And you have already taken some big ones with counseling and seeing a psychiatrist in April. Hang on to the good and the positive thoughts, and ignore the negative. Come back here often. It's the best place for the most accurate and the latest information but especially for the encouragement and support we all need when things get difficult. Please let us know how you are doing.

Thank you, Christine and Ann-Marie.

Reading your posts to Roger also helped me.

I agree that it must take time, patience with yourself, and practice to stop worrying so much and think positively. For me, some days/moments/hours are better than others.

At least for me at this point, I usually wake up with thoughts other than cancer. It used to be that cancer was the first thing on my mind...not a good way to start your day.

I am coming up on my first anniversary of diagnosis and surgery. I know that anniversaries of traumatic events can be hard, especially in the first few years. So, again, I thank you for these posts and sharing your knowledge, experience and hope!

Roger, I completely understand your line of thinking. I am a healthcare provider as well and we can be especially "bad" patients. Sometimes we can be our own worst enemies! I hope you get to the point where you have more moments of peace of mind, rather than anxiety and worry. I hope that for all of us.

Wish all of you the best,
Kerri

Hi Roger: I relate to your post. I go from denial to information overload. I don't know which is best... I am one year out of treatment. Today I had another monthly laryngoscopy - though they will now be every other month. My oncologist assured me that to get through the first year with no recurrence is huge. I translate that as in to get through every day with no recurrence is huge. The longer we go without a recurrence the better our chances are that we will continue in good health. Too much information has been bad for me, so I know I live in denial a lot of the time. However, reading your post today was a good reminder to live each day to the fullest - whether you are a cancer survivor or not. Be well. Blessings. -Michelle

Statistics class 101: get the largest sample size you can across as broad a range of factors as possible. 14 cases out of 30-40,000 is statistically so insignificant that you can dismiss it as any sort of guideline.

It would take hundreds or more to even make me look at the study. Step aside from the cancer forums and read some statistics and probability wikis and you'll feel a lot better. Anything could be factored into the OP's cited study, there could be an environmental factor at work, quality of care received, heck anything can heavily skew the 'results'. Medical stats are some of the hardest to get accurately and the worst to remain relevant because of the nature of medicine's constant improvement.

Roger - the articles that you are reading and concerned about ARE A DECADE OLD. We didn't know squat then about HPV disease, and OCF was just beginning to fund research on what we do know today. If it is related to HPV and not published in the last couple of years it is probably out of date information. What we are learning is accelerating and changing monthly. Basing any feeling or concerns on that is a waste of your emotional energy.