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I've just had surgery for a tumor on the side/under my external tongue, and three lymph nodes in the same side of my neck. I lost a small amount of tongue, I almost can't tell the difference in size. I am 36 years old. I will be staged in a few days and make appointments to proceed with radiation and probably chemo.

I know people are down on statistics, and believe me I understand that if there's any chance of survival you hope and you fight, because whether your odds are 1% or 50% you are only one person and you may be that 1 out of 100. But I want some statistics because I think all information is useful in some way. I don't want to be shielded from anything.

And so, I have a question about this "five year rate" that I keep hearing about. Do I understand correctly that if you go five years after treatment without cancer returning, you are more likely than not free of cancer and will go on to live a normal life expectancy? Again, I am 36 years old. What's the percentage on people who go five years in remission and never recur? What is the percentage of people who treat cancer only once? Only twice? Etc. What are the odds of me living to 75/die of something other than cancer?

Last edited by AvatarMN; 01-28-2012 10:15 AM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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You know, I would kind of like to know the same thing. My surgeon told me that now I am more than two years out, that I have an 80% chance of beating it, but then I see that a number of people have had a recurrance. So, I don't know. Maybe I am better off not knowing.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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That's a good question, isn't it?

Last night, I saw a 91 year old woman who had tongue cancer a little less than 50 years ago. No we weren't at any oral cancer gathering. Hers was small like mine was but she did not have lymph nodal involvement. But she had radiation anyway because she did not want her tongue cut! So she had both external beam and the kind they put in your mouth--brachytherapy, I think. She looked pretty good I thought.
My daughter's father-in-law told me he has known a woman who had oral cancer and rather severe surgery for it 30 years ago, and she is still around, now in her 60's.

Anytime you add nodal involvement you add more risk.

Do you know for certain that you have three lymph nodes involved? Sorry, at first I thought you did not have a neck dissection, but see now you did. I guess you have the final report on that?

You can find various scientific studies which will give you different percentages. I have my own opinion but hesitate to give it to anyone! My ENT seems to feel my prognosis is very good, but I did not ask him what you are asking.

Sorry--this is probably not too helpful.
Best,
Anne

Last edited by AnneO; 01-28-2012 04:19 PM. Reason: neck dissection

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Any answer that you get to this question has a 50/50 chance of not applying to you. You are a unique biological entity with a unique gene make up and nothing that happens to someone else will happen to you the same way. While our diseases and the different etiologies for them are the same, how it impacts our body is unique. There is no information that statistics are going to give you in my opinion, that will be actionable on your part. You can drive yourself over the end emotionally though, as we all - no matter how many years out from diagnosis we are - live with a sword over our heads. This is the nature of survivorship. I think the question about living to 75 and dying of something else, might be more dependent on other things than your cancer. Your diet and exercise habits, the genes you inherited from your grandparents, your access to quality healthcare in general, and then my favorites, how bad a driver you are, or if you piss off someone's husband ( the way I thought I might go as a young man). Anyone of a myriad of things can take you off the face of the earth, you couldn't count them all. I am astounded that I actually dodged so many of life's bullets BEFORE I had cancer, that when I got it, it was the first time that I seriously considered that I wasn't the chosen one to live in perpetuity.

http://oralcancerfoundation.org/facts/stages_cancer.htm

I am rather surprised that someone started treatment on you (surgery) without a full work up and staging. Staging after all determines treatments, and the NCCN guidelines that are the national standard of care re driven by staging. The way you worded it it, certainly seems like without knowing everything, and without a comprehensive treatment plan from a multidisciplinary team, treatment was started. Where were you treated?

Last edited by Brian Hill; 01-28-2012 04:13 PM. Reason: added link

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.
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good question. i┤m in the same dillema...


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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Hi Brian, my 1st tratment were surgery with frozen biopsy to check malignancy. After that they made a full pathology test to find me millimeters. My lesion were 0.63 cm depth and then the doctor said I┤d have partial neck dissection because with this depth i had 50/50 percent of it had spread.

And fortunately all 57 nodes were clean. 0/57 is my favorite number...

then after all this crazy period i was staged T1N0M0.


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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All it takes is one teeny-tiny cell to be missed for a recurrence to happen. It happened to me, twice. As far as the odds go, I should not be here but I am. This is why I choose to ignore the odds. Ive seen lots of things on this forum since Ive been around a few years. Ive seen patients with recurrences almost immediately after they finished treatments and then others have recurrences years later. This is something that we are all afraid of. Its much more productive to go about living a good life and keeping the "what if's" out of your daily thoughts. There are many here who have beat the statistics. Ive seen members who should have been easily treated not get thru this even once while some who were Stage IV conquered it.

Try your best not to worry about the odds. Worrying will steal your time from you. Go out and make the most of every single day. None of us are guaranteed to be here tomorrow. Live for today!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thanks again for the new replies.

Like I said, I know not to hang too much on odds. Whether it's 1% or 50% I'm only one person and I can be that 1 in 100. And it may not make a lot of sense, but knowing odds will make me feel better whether they're good or bad. I'm afraid that no one can have a 40 year long stretch of remission. Any statistic at all would only help me; a bad one won't send me into a tailspin, knowing what the number is will lift me no matter what it is (unless it's 0). I can't believe this statistic isn't easy to find, it's literally the first thing I wanted to know.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Posts: 290
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Ben,
I thought I just told you about one person with a nearly 50 year remission in oral cancer. It happens in other cancers as well. I have communicated personally with one person on this board who has been in remission for over 20 years. There are likely others. Our cases are all different though and cannot logically be compared. That is why those meaningful statistics are not out there.

I asked this 91 year old if she ever had problems with worrying about her cancer coming back. "No. It doesn't do any good," was her reply. I myself try to remember that, hard to do sometimes.

My point and the point of others here is that you are worrying about the wrong thing. Make sure you are getting the best treatment and taking care of yourself right now. That is a part of your personal odds.

That is not to say that all or most of us have wondered about our "odds", but eventually you have to realize that "time will tell". Keep in mind, too, that there is always the possibility of new drugs, new treatments in those coming years.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Posts: 4,751
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I deal with lots of doctors as part of my work at OCF. Treatment people from all disciplines and researchers both. I work with the SEER database numbers routinely as we are looking towards the future by reviewing the newly obtained data from the past.

http://www.oralcancerfoundation.org/HPV/pdf/JCO-2011-Chaturved.pdf

Of all these people, one good friend at MDACC who quelled the same drive for an answer in me told me the answer that he gives to every patient that he sees, for the very reasons I spoke to above. "Your chances are 50/50". He told me that he does this because in those who might have a lesser number, knowing it becomes a self fulfilling prophesy; people can just give up fighting or trying. In people with a number above that (who might still die anyway for reasons also mentioned above dealing with genetic predispositions) it may create unrealistic expectations.

Sooner or later, even if you become a student of the SEER database and try to plumb its depths of statistics, you will eventually come to a point of acceptance of the unknowable nature of your quest and equilibrium with it in your spirit. It might take you a year of perusing data sets, but in the end that is the only answer that exists - you cannot know anything definitive.

I wish that I had not spent my first couple of years of survivorship obsessed with this. In the end, while I can quote you chapter and verse of statistics from the SEER database, that data in its own way is flawed and can be biased. It can be twisted to mean what you desire it to, and in the end the answer will still be the same. There are no absolutes no guarantees.

Live each day fully as if it were your last, as tomorrow is promised to no one. My life has never been more productive since I embraced that idea, my days never so rich, nor fully spent in meaningful pursuits. I wish that I had lived this way before I had cancerů the things that I could have enjoyed and accomplished if I had just learned to live in the moment. To fully enjoy the companionship of friends and loved ones, to savor every meal for its intricacies, to fully embrace the joy of the good that passes my way and the pain of what comes in equal doses. That we are all going to die is a given, sooner or later it is everyones destiny, and almost never in a manner or time of their choosing. But not everyone fully lives. Awareness of the finite nature of our existence is the beginning, and release of the desire to try to control is the constant battle for most. So let me set you on a path. Your odds of living to a ripe old age are about 50%. Own it and get on with the living.


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.
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