Oral Cancer Foundation Prognosis Information

hilllaguna said:

OCF site
This quote must come from a document or PDF inside the OCF site that is old. As someone that speaks for OCF at symposiums and universities, I can tell you that this is not the current information that they are putting out. Please provide me the web page this comes from as a URL, and I will check it out for you. If you would like to discuss what the current rates are, that the foundation and I speak to, I would be happy to talk to you. Those numbers that the foundation uses come from the SEER database.

I can tell you that the 2012 5 year survival numbers are up some from the previous published SEER information, and when you consider all stages at time of diagnosis, all genders, and all etiologies; the 5 year survival rate is about 57% up from 50%. While those not familiar with the situation might think that this is because we have made some progress in treatments, it is primarily due to the fact that more of these cancers come from an HPV16 etiology, which responds better to radiation treatments than the dominant historic cause tobacco. So has the viral cause increases as a percentage of the total number of oral cancers diagnosed, the survival numbers go up as well.

additional comment
I should add to this comment that if you know the etiology of your cancer, you can look at different numbers. So for instance with the survival advantage that an HPV16 cause has, the percentage of survival at 5 years goes up significantly. I can get you links to the peer reviewed science articles that speak to this.

It's Not A Tuma....
I am not a numba...., LOL

Sooner....one thing that most of us that have been around for awhile will tell you....

Don't search statistics of your disease on the internet....you will end up finding numbers that you don't wanna see, and usually aren't specific to your individual case.

So many things come into play, age, health going in, genetics, heredity, yada, yada, yada....

Not to mention that most statistics can be meant to show what the originator wanted, or skewed toward a certain outcome.

JG

Old Data
Sooner,

I agree with the others, allot of the Data out there is old. Like many here, once I was told I had Base of Tongue cancer, I went to the internet to find data as far as survival rates, etc. You can imagine the uneasiness of reading all that stuff. I either read it here or another site I visit, to ignore the numbers. The only important number is number 1( you ).

Your post indicates that the survival rate is better in Stage 1 or 2. Of course it would be, but unfortunately, must of us fall into the Stage 3 or 4 range because we don't find a problem until it is a lump or bump somewhere. That was my case, felt a tiny BB size bump under my jaw and went to the Doctor.

Yes, if we stay on the boards long enough, we will be speaking of someone we know that has lost their battle with this disease. As mentioned above, there are many long term survivors around. My neighbor is one of them, he is now a 15 year survivor.

My Best to You and Everyone Here

CivilMatt said:

bummer
Thanks for responding everyone. It is threads like these that throw me into doubt and depression. You would think that after being through treatments I would be more mature about all of this. I haven’t met NED (yet) and as a newbi, believe it or not I am still struggling to get my head around what has happened. To this day, I never felt sick prior to diagnosis. I am pretty sue the radiation and chemo were given for a reason and deep in my heart I do know what has happened, but a feeling, many of you have completely accepted, eludes me (it scares me). That is, what is it all about, is this it, do I still do long range planning or should I be drawing out my IRA money now?

There I feel better, now exit this spider web of a thread and get back to the real world of open and beautiful threads.

Thanks,

Matt

The two boards are different
The OCF board is a more realistic representation of the way things really are and this is a more feel good place which is why I hang here. They both have valuable information. Matt what you feel is perfectly normal and it's ok to be scared, it's the way you are wired. I'm at three years and it still eludes me.

statistics, who needs them?
Prior to my current (health) position, condition, I always felt statistically I was in the clear. I made it to 55, lived a healthy life style and cancer was not prevalent in our family. Now that it is here, it is 100% (cancer), I got it and every day I live is 100% (alive) and when I die, I will be 100% (dead). You can stir me up with other, like cancer patients and do some realistic predictions on survival rates (even positive) but it is pretty tough to see the sunny side of any statistic once you are in this club. Not impossible to see, just difficult for this newbie. If I get my way, I’ll be helping others and enjoying reading posts from John, Tim, Phrannie, Hondo, etc.. in the year 2017. That should give me enough NED’s to put this puppy too bed.

Lots of hope,

Matt

CivilMatt said:

bummer
Thanks for responding everyone. It is threads like these that throw me into doubt and depression. You would think that after being through treatments I would be more mature about all of this. I haven’t met NED (yet) and as a newbi, believe it or not I am still struggling to get my head around what has happened. To this day, I never felt sick prior to diagnosis. I am pretty sue the radiation and chemo were given for a reason and deep in my heart I do know what has happened, but a feeling, many of you have completely accepted, eludes me (it scares me). That is, what is it all about, is this it, do I still do long range planning or should I be drawing out my IRA money now?

There I feel better, now exit this spider web of a thread and get back to the real world of open and beautiful threads.

Thanks,

Matt

Well Matt, I solved that IRA
Well Matt, I solved that IRA question when I resigned from my job 3 months ago. Took what was there, elected no withholding and am building a house with my husband. It won't be huge but it will be MORTGAGE FREE! I will deal with the IRS later. So I was kicking myself over a different couple of subjects but the same feeling. I think it's very important to visualize yourself in long term situations. I can totally see myself in the new house, front bedroom tricked out as my art studio, hair untouched by due and always looking wild from the breeze. I see myself completing hundreds maybe thousands more drawings and learning to paint and maybe teaching others.

For me, it is absolutely not acceptable to stop making long term plans. That would feel like I was throwing in the towel before the bell even rings for round 1.

Of course, I've just started my treatment today and I know there will be some rough patches. On those days it will be harder to keep the same outlook but it's most important to try. And I am scared. It's part of the whole deal. But I will try my damnedest to not let the fear affect my healing process.


Wow that was way too long huh???

CivilMatt said:

statistics, who needs them?
Prior to my current (health) position, condition, I always felt statistically I was in the clear. I made it to 55, lived a healthy life style and cancer was not prevalent in our family. Now that it is here, it is 100% (cancer), I got it and every day I live is 100% (alive) and when I die, I will be 100% (dead). You can stir me up with other, like cancer patients and do some realistic predictions on survival rates (even positive) but it is pretty tough to see the sunny side of any statistic once you are in this club. Not impossible to see, just difficult for this newbie. If I get my way, I’ll be helping others and enjoying reading posts from John, Tim, Phrannie, Hondo, etc.. in the year 2017. That should give me enough NED’s to put this puppy too bed.

Lots of hope,

Matt

What a great thread
I'm really impressed with the comments to this thread. Everyone gets it. We are all unique biological entities, so any given statistics may or may not apply to you individually. My coping mechanism when I was first in treatment was straightforward. LIke many I wanted to know what the future was (silly me) and if I was actually going to be part of it. I have a science background so after ambiguous answers form my doctors I started researching the SEER database that collects all the usable data in the US (Surveillance, Epidemiology, and End Results). Of course at the time I couldn't understand why my docs gave me ambiguous answers, but cancer and my name had recently been used in the same sentence and I WANTED TO KNOW!

But if you understand how our government collects this data you would really not pay much attention to it at all. It is kinda like the Nielsen TV ratings. They have around 13 sites in the US, some cosmopolitan some rural, that collect all the data on disease incidence rates, causes, and deaths. Then from those very few sites, they extrapolate what is likely the big picture (numbers) for the whole country. Jeez, this is really a best guess when you look at how its done. Knowing that,. I always laugh when I see some web site say there are going to be 39,753 cases of oral cancer in the US in 2012 or whatever. You can't get to that detailed a number through this educated guess process. They are probably accurate to within 500-1000 cases, but to use the number the way some do, they obviously don't get how they derive it. There are going to be ABOUT 40k cases diagnosed is much more realistically stating it. So that is problem number one with the data.

Anyway, I looked at the people that the numbers were drawn from. (Problem number two with the numbers as applied to any singular individual) I started noticing how different I was from them. I had found a rationalization tool. I wasn't female, I wasn't over 50, I wasn't black, I wasn't a smoker ever, and so on. Pretty soon I had throughly convinced myself that those numbers could not apply to me, since I was nothing like to people that the data was drawn from. Of course this technique doesn't hold up to serious science, but to me it made sense at the time. I still tell people to consider this especially when I meet a very young patient. (The data is heavily weighted to individuals over 50).

While some have posted here about other H&N cancers, any numbers that I put out there are very specific to anterior and posterior oral cancers. They do not consider the other anatomical sites.

You guys all have great attitudes.

Greg53 said:

Statistics
Hey There,

I’ve attached a link to an article by Stephen Jay Gould, a paleontologist, educator and author. I heard him speak at a commencement a few years ago and became a fan of his. He was diagnosed with a rare, terminal stomach cancer and was told the median time for surviving his cancer was 8 months. He wrote what I thought was as interesting article on statistics - “ The Median isn’t the Message”. http://cancerguide.org/median_not_msg.html

I am definitely not a mathematician, but being an engineer (I’m a civil also Matt) I am a bit of a numbers geek. Now most of you will say I’m too cool lookin’ to be a geek or an engineer, but…….. hey, that’s what I am . However, being a numbers guy, I do like to review the numbers and statistics, but like many have pointed out here a lot of the statistics are generalized and do not equate with exactly what each one of us is going through individually. Also the percentages do change, and for most conditions generally improve as you move away from the end of treatment (ie- so at 2 years out, generally at 85% survival rate versus a lower rate at the beginning of treatments). I don’t dwell on the “bad” aspects of the percentages, even though I can understand why that would be tough to ignore. But I do find it interesting to review these.

My opinion, don’t let these numbers drag you down. Make the most of what you have today! And by the way – Stephen Gould lived 20 more years after his diagnosis. I may not make that number, but I’m sure gonna give it a he!! of a try!


My best to everyone here!

Greg

Greg!
I loved the Stephen J Gould article. It really lifted me up when I needed it, a couple of years ago. Thanks for re-sharing.

Deb

hilllaguna said:

What a great thread
I'm really impressed with the comments to this thread. Everyone gets it. We are all unique biological entities, so any given statistics may or may not apply to you individually. My coping mechanism when I was first in treatment was straightforward. LIke many I wanted to know what the future was (silly me) and if I was actually going to be part of it. I have a science background so after ambiguous answers form my doctors I started researching the SEER database that collects all the usable data in the US (Surveillance, Epidemiology, and End Results). Of course at the time I couldn't understand why my docs gave me ambiguous answers, but cancer and my name had recently been used in the same sentence and I WANTED TO KNOW!

But if you understand how our government collects this data you would really not pay much attention to it at all. It is kinda like the Nielsen TV ratings. They have around 13 sites in the US, some cosmopolitan some rural, that collect all the data on disease incidence rates, causes, and deaths. Then from those very few sites, they extrapolate what is likely the big picture (numbers) for the whole country. Jeez, this is really a best guess when you look at how its done. Knowing that,. I always laugh when I see some web site say there are going to be 39,753 cases of oral cancer in the US in 2012 or whatever. You can't get to that detailed a number through this educated guess process. They are probably accurate to within 500-1000 cases, but to use the number the way some do, they obviously don't get how they derive it. There are going to be ABOUT 40k cases diagnosed is much more realistically stating it. So that is problem number one with the data.

Anyway, I looked at the people that the numbers were drawn from. (Problem number two with the numbers as applied to any singular individual) I started noticing how different I was from them. I had found a rationalization tool. I wasn't female, I wasn't over 50, I wasn't black, I wasn't a smoker ever, and so on. Pretty soon I had throughly convinced myself that those numbers could not apply to me, since I was nothing like to people that the data was drawn from. Of course this technique doesn't hold up to serious science, but to me it made sense at the time. I still tell people to consider this especially when I meet a very young patient. (The data is heavily weighted to individuals over 50).

While some have posted here about other H&N cancers, any numbers that I put out there are very specific to anterior and posterior oral cancers. They do not consider the other anatomical sites.

You guys all have great attitudes.

lol
bingo.

Tim6003 said:

Numbers guys ....my curse...
LOL...well maybe it's because I am used to running Hilton Hotels for a living....medium size ones and one thing we have to do as GM's is crunch, crunch, crunch numbers!!

Pat (longterm) can tell on my by some of my private messages...

Because number crunching is my aquired curse in my job...I guess I take that over with me in this cancer deal I "had" ..

My ENT who is "they say" well known and very good keeps saying recurrence rate is 35-50% (well no wonder you get on pins and needles when he keeps saying that) ..but I appreciate his honesty...

Ratface says his research shows 25%

OCF says my survival rate for base of tongue stage III w/ one lymph node involved (5 years out) is 57% but then it also says HPV 16 + gives me an advantage.

Do you get now I am a numbers guy? LOL

However, I guess I am different...I want numbers, I want knowledge (but like John says it may just be I have not gotten there yet) ....

Anyways....thanks so much for this thread and the info....I for one would like those links and articles....I have a wife and five children and no matter what the future holds I like ot plan.

Before I ever got cancer I would often talk to my wife about what she could do / some suggestions on what to do and talk about life insurance...blah blah blah... My wife is the type that never liked to discuss those type things and it was hard then to do so...but I felt a duty to her and the children to "push" the matter ...even more so now.

One thing I will say ...I absolutely love all the posts and all the people here who contribute to the forum. Thank you all. It's more exciting than my five children. All the humor, worry, sad, happy moments to share with you all....

...I'm sure many of you wish I would not post so much sinc obviously I "talk to much" ...sorry about that.

Best,

Tim

Outlier
Since you like statistics, I look at myself as an "Outlier";

An outlier is an observation that lies an abnormal distance from other values in a random sample from a population. In a sense, this definition leaves it up to the analyst (or a consensus process) to decide what will be considered abnormal. Before abnormal observations can be singled out, it is necessary to characterize normal observations.

Just because I am Abi-Normal...

JG