#1032 04-24-2003 07:48 AM | Joined: Apr 2003 Posts: 20 Member | OP Member Joined: Apr 2003 Posts: 20 | 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
Reborn June 27, 2001
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#1033 04-24-2003 11:03 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#1034 04-24-2003 11:12 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | 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.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1035 04-24-2003 11:45 AM | Joined: Apr 2003 Posts: 20 Member | OP Member Joined: Apr 2003 Posts: 20 | Okay, well I guess then that there is a 100% chance I'm going fishing and not worry about it! Thanks guys.
Reborn June 27, 2001
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#1036 04-24-2003 12:22 PM | Joined: Dec 2002 Posts: 235 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2002 Posts: 235 | 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?
DonnaJean
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#1037 04-24-2003 02:15 PM | Joined: Apr 2003 Posts: 20 Member | OP Member Joined: Apr 2003 Posts: 20 | 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.
Reborn June 27, 2001
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#1038 04-24-2003 02:58 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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...
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#1039 04-24-2003 03:47 PM | Joined: Dec 2002 Posts: 235 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2002 Posts: 235 | 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.
DonnaJean
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#1040 04-24-2003 04:23 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | 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.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1041 04-24-2003 04:38 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | 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.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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