I'm coming up on two years "cancer free" in July and was told that at that time I have an 85% chance of survival. Now I read on the oral cancer facts page that only 50% of oral cancer patients survive the first 5 years. I'm wondering if the only difference is that I had an unknown primary. Does anyone have any information on this subject?

Jeff

Do not compare yourself to statistics. The reason that 50% do not survive is that they are caught very late, and are physically older, this skews the statistics. So that 50% which passes away, has it's own unique demographics just as the 50% that survives do. If you get caught up in comparing yourself to numbers drawn from national surveys, all you will accomplish is being one step closer to the loony bin. How can you tell which one of these groups your unique biology, cancer, age, chromosomal makeup etc. puts you into? You cannot. You are a unique biological entity that has responded to unique treatments, not a number or a statistic. Just be vigilant from now on and if something visits your door again, catch it at the earliest possible time.

Hi Jeffery,

Welcome! Your question is in an area that I like to play with a bit.
First, congratulations on your 2 year mark.

I have a bit of a pet peeve with statistics. When you are the cancer patient the statistics loose most of their value. For example how will you live 85%? Any one person either gets 100% or they get the 0%!
The statistics for cancer survival are generally based on large pools of patients with a broad range of treatments and tumor characteristics. from there you can derive an average survival number (or many subsets of numbers for various stages). It is interesting if you like statistics or if you want to do reaserch on a particular cancer or treatment but not very usefull if your thinking about yourself. You can become overly depressed if you have bad numbers or you could become overly confident if you have good numbers. The real deal is nobody knows for sure what your numbers are! Just as I don't know what my numbers are. (this is true for the cancer and true for all the unknown things that may happen to me in the next seconds, minutes, hours, days, years.)
In my case the doctors disagreed on survival. They both agreed that it was 50% if I had surgery alone, but the ENT surgeon said 75% with radiation and the Radiation Oncologist said 95%
Of course this means I bring flowers to the Rad. Doc. every day and nothing to the ENT. Actually I try to ignore all those numbers.

Once again, I really only want 100% survival.

So far that is what you have gotten. don't worry be happy.

Okay, well I guess then that there is a 100% chance I'm going fishing and not worry about it! Thanks guys.

Just out of curiosity, when do most people observe being "cancer free" for any length of time? Is it from the time they were first diagnosed or once they have finished their treatments? For all the survivors out there, when did you mark your first milestone of being cancer-free?

Hi DonnaJean,

I was told the clock starts from the time you start your treatment. For me that was surgery and then radiation. Others might have radiation first and the clock would begin on the day of the first dose of bar-b-que.

I would think that the only time you could use the term cancer free, was before you had it (unknowable) or at some point right after your treatments when the docs did their last set of scans etc. and said...

Thanks Jeffrey and Brian. I certainly can understand what you meant Brian - when you say that this disease can feel so well "engrained" into you. The thought of a recurrance scares the you-know-what out of me (and it doesn't take much to make me into a bundle of raw nerves!)...so I try not to think about it, but it's always in the back of my mind. Like most people, I look forward to the next drs appt. - yet dread it at the same time. There's nothing sweeter to the ears than to hear that everything is going well and there's no sign of this disease. On the other hand - pure dread and fear for the obvious otherwise. Believe me - I am so thankful for every day my husband is here to share life with me, and we no longer "sweat the small stuff" like we used to. It's funny how it can take something like this to put life into perspective and make you realize your priorities. As a footnote - congrats Jefrrey on your 2nd year of slaying this beast - and best wishes for continued health and success in the future as well. Brian - my hats off to you and everyone else who continue to inspire and motivate us "newbies" and all who need to see that there is hope after a diagnosis of the big "C". Thanks again.

Jeffery, That is the attitude!

And remember to wear a life jacket! I don't want you messing up the statistics.

P.S. any time you need company chasing Tarpon you Just let me know.

I am cancer free too. Therefore I think I will go out and buy a new $500,000.00 life insurance policy. Do you guys think they will sell me one?

Danny G.

[quote]Originally posted by Mark:
Jeffery, That is the attitude!

And remember to wear a life jacket! I don't want you messing up the statistics.

P.S. any time you need company chasing Tarpon you Just let me know. [/quote]Hi Mark,

Funny you should mention the life jacket. A friend of mine at the gym told me a story of his friend who was diagnosed with incurable lung cancer. He was given 6-8 months to live. The doctors wanted him to have surgery and undergo chemo. He elected not to do anything and just "party" the remainder of his life. Seven years later he's drunk in Vienna and drowns in one of their canals.

Haven't chased any tarpon, although that sounds like a good idea -- guys/gals are catching them right in the intercoastal just off of 17th street. I was in Costa Rica in February. I was hoping to catch a marlin but settled for a boatload of sails -- all catch and release, of course. Caught a few dorados (mahi mahi) as well. They were fillet and release.

Brian, as for the previously mentioned scans; while researching the effectiveness of CT Scans, MRIs, and fine needle aspirations, I discovered that CT Scans have a 69% accuracy rate, and MRIs and Needle Biops have an 85% accuracy rate. Why was it that I was looking for this? Because I had a CT Scan and two needle biopsies which indicated a benign tumor in my neck. The doctors kept "poo pooing" my predictament until I raised the bullshit flag and told them to cut it out. A 2 hour surgery turned into 6 1/2 hours and a declaration that the tumor was malignant. Go figure. There's always that human element to factor in.

While doctors hate to hear this, sometimes we know our bodies better than a scanning machine. It may sound new age, voodoo, or whatever, but I know when something isn't right in me, and I don't care what their damn machines and test say. This isn't hypochondria. I kept telling the doctors before my diagnosis that that lump in my neck didn't hurt. I knew that was not an infection. A swollen node from and infection is tender to the touch, I could flick this thing with my finger and not a bit of pain. More of the pooh pooh routine, and another 2 weeks wasted on antibiotics...till a FNB found malignant cells in that node. Hey all you doctors out there...just because I'm paranoid, doesn't mean something isn't really out to get me!!!

Digtexas: As to the life insurance...I thought at five years out I would be able to get a small policy... think again. No one would touch me, not at any cost. God help me if I lose my crumby Blue Cross who I had to fight with daily during my illness because I went out of state for treatment. I'd never get another health insurance policy. They've upped my rates since all this, and the premiums are almost the same as my house payment!!! But if I don't keep it active...who else will take me on?

Donnajean: It has taken me fifty years to learn not to worry about the future. It is still a hard fight to live in each day that I am in fully. You waste too much of the present worrying about a future that you can likely not control anyway. My 5-year anniversary came and went, and it wasn't until Ingrid reminded me that I had passed a milestone that I thought about it. Perhaps this shows some success at my ability to live in the present, on the other hand it just may mean that I'm now of the age where those "senior moments" where you forget what the hell you were doing are occurring more frequently.

There are obviously, to us anyway, myriad unresolved issues pertaining to our health care system. Unfortunately, it seems it all boils down to money. When times are good we sweep everything under the carpet. When times are bad we pawn the carpet and incredulously stare at the dirt.

On a brighter note, this is a fantastic website! Thank you Brian. Information is key to understanding.

Jeffrey,
I like your attitude. It must be that pilot thing.

Brian, I actually do have life insurance, health insurance, and, thank goodness, even disability insurance. Blue Cross of Texas has been not too bad. They all need a little butt kicking from time to time to keep them in line.

Danny G.

[quote]Originally posted by digtexas:
Jeffrey,
I like your attitude. It must be that pilot thing.

Brian, I actually do have life insurance, health insurance, and, thank goodness, even disability insurance. Blue Cross of Texas has been not too bad. They all need a little butt kicking from time to time to keep them in line.

Danny G. [/quote]Double ditto on the disability insurance Danny. It truly is a life saver.

Jeff

Jeff... I like the metaphor, I think I will steal it and use it in one of my presentations. (They say theft is the sincerest form of flattery...) Your profile doesn

Jeffrey,
I cannot recall if it was during or after radiation treatment, but during the time that I was sick, could hardly talk and felt like crap, I got a call from Met Life ( Snoopy administers my disability policies ) telling me that one of their representatives would be in my area soon and would like to meet me. I was thinking... its not like I am claiming a bad back or depression or carpal tunnel syndrome...I've got friggin cancer...and you are sending some dude who travels America to look me over.

Well, being a lawyer myself, I called one of my former partners who handles cases against insurance companies and from that moment on he did all the talking and we told the investigator or whatever he was to meet me at my lawyer's office. I also had the fellow who sold me the policy, with whom I'd grown up, to be present.

Smiling faces sell you the policies, but when you make a claim you get to meet some bulldog whose mission in life is to hold down the cost of payouts by the insurance company. They are still paying me, but are beginning to make rumblings that I should be able to work more, etc. I am fortunate that I can let my lawyer do the talking.

Danny G.

Wow, flying in a P-51 must have been quite an experience! What an awesome time you must have had. Not too shabby in a Pitts either. A good way to cage your eyeballs, lol. I got to fly in an A26 Invader one time in Lubbock. That was quite an experience.

Yes, I have an ATP and fly/flew/will fly again for Continental. But not yet. I'm on the 737 out of Newark or was anyway. Hopefully when I'm ready to come back there will be a company to come back to. This is a scary industry especially if you're in a Southwest cockpit these days, LOL.

As for the metaphor, go for it. But if they don't like it, no blaming it on me, lol.

I know exactly what you mean Danny! I get a phone call every 6 months. Nothing adversarial, of course, but it is annoying. In January I received a call but this time from a different person.

During the course of our "routine" conversation I began to detect some hostility. I asked him if something was bothering him and he said no. So then I asked him where the guy that usually calls me was and he started himming and hawing. He said this guy was sick. I said what do you mean sick, like as in the flu? He said no that this guy has cancer. It was then I realized this guy was actually hating having to make the phone call in the first place. He told me he wished me the best. I told him I'd be talking to him in six months. I actually hung up the phone feeling sorry for him.

Jeffrey,
Your situation regarding disability may be more clear cut than mine. Are you not allowed by the airlines to fly? I am allowed to go into court and try a jury trial...but at this point with my low level of stamina, concentration, and over all strength,not to mention eating difficulties, I don't think there is any way that I could perform at the level that I would expect of myself, especially with someone's freedom at stake.

Danny G.