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Posted 1/16/2008 3:42 PM (GMT 0)
Someone asked in another thread when we are considered cured. 

I thought it best to start a new thread about it, since early on in my own experience I noticed the word "cured" was steadfastly avoided. That got me really scared when I realized of all the surgeons I had seen, not one of them ever said anything like "...and then you'll be cured."

Then there was the time I was doing some research and saw a definition that stopped my heart.  "Prostatectomy: An ATTEMPT to cure prostate cancer...."  The rest of the definition was left unread as that word "attempt" sank in.  Part of my whole process was realizing the fact that this event was not something that will have happened to me and I can get over it, and forget all about it like an appendectomy.  While some of us have excellent chances of never getting PCa again, it is something that will never, ever completely leave our psyche. My doctor told me I have a 98% chance of never seeing it again. But as time goes on, those percentages get lower.  Even with my excellent numbers, my nomogram says I still have a 40% chance of dying of PCa in 25-30 years. While that is a long way off, and the chances are still better than not, that I will die of something else, this cancer thing was a whole long process of acceptance of my mortality.  The lack of the word cure was just part of my whole acceptance process which is certainly still ongoing.

For me, just knowing parameters was helpful. No, odds are huge that I will forever be fine re: PCa. But as time goes on, I will let this whole experience be part of the imparting of wisdom that comes with age.

 

Posted 1/16/2008 4:26 PM (GMT 0)
Paul 1959,

I'm not familiar with data that suggests a "contained 6 gleeson post-surgery pathology" moving from 98% no recurrence to 40% chance of recurrence at age 75?

Perhaps that is "all cancer" and not PC?

I'll be happy to discuss it with you - until you are 100.
Then you are on your own!  JK!

CCedar
ICTHUS!
CHOOSE LIFE!!
Posted 1/16/2008 5:09 PM (GMT 0)
It's just a numbers game, but it was part of my process that I needed to work through. That 2% probablility gets larger as time goes by. It's just juggling the laws of probablility. If you do any of the online Nomograms, the odds get lower and lower as time goes by, not better and better as you might expect. www.nomogram.org  oops.  I had .com. sorry 

Am I living in fear? Not at all - I'm now living, I hope, grateful for every day and know that i can't take any of them for granted. Some people might find doing these nomograms troubling and they should avoid them. My numbers are very good. I just need to see the larger picture. It will make me always grateful for what i've been given.
Paul
Posted 1/16/2008 8:59 PM (GMT 0)
I have had similar concerns about the statistics, though I believe that the probability of no reccurence diminishes over time for the GROUP of men covered by the nomogram, not the INDIVIDUAL. For the individual, it actually improves. I have posted on this before and would welcome anyone to prove me wrong. The odds of reccurence are greatest for the individual during the first year or two, at least for radical prostatectomy. (edit)  does not appear to be a valid address. poster corrected address above... in original posting   I have never seen statistic for a Gleason 6 with negative margins anywhere near 40% for recurrance-free probability. Age:44 Father diagnosed and cured at age 52. 08/21/07: Diagnosed with T1c cancer 1 of 12 biopsy cores positive; 10% tissue Gleason score: 3+3=6 PSA level prior to biopsy: 4.3 (velocity < 0.4ng/ml) 10/19/07: da Vinci prostatectomy by Dr. Vipul Patel at OSUMC.               Difficult surgery due to prostate inflammation.               Both nerve bundles spared.               Spongy erections began within 24hrs of surgery! 10/24/07: Catheter out; down to 1 Serenity pad/day next day.               Final pathology: neg margins, no capsular penetration,               Gleason 3+3=6, 5% tumor involvement, multi-focal. 11/04/07  First usable erection with Cialis 11/22/07  Bye-bye, pads Post edited to to show corrected address.. www.nomogram.net Post Edited By Moderator (bluebird) : 1/16/2008 6:45:50 PM (GMT-7)
Posted 1/16/2008 9:13 PM (GMT 0)

Hi Paul,

Thanks for starting a new thread on this topic.  It will be interesting to hear what others have to say about it.  Someone said they consider you cured after 5 years of clean tests.  I guess that would be a good anniversary to look forward to and celebrate!  We're celebrating little things like taking a pee! Baby steps... one day at a time. We too are very grateful for every day and even more so now. Looking forward to growing old and grey together.

Hell we felt like we won the lottery getting a good path result last week.  Still smiling and will continue to keep positive thoughts on this journey.  His first specialist did use the word cure, said you cut out the cancer, wait a month and if the PSA is zero then you are cured and have a nice life.  And his surgeon said he'll have to find another way to die.  Now call me naive, but I kind of like the idea of two professionals with their kind of experience with that kind of attitude!  

I read where the cancer doesn't come back.  It never left. 

Marie

Posted 1/16/2008 9:28 PM (GMT 0)
Right after surgery, I bought the ugliest black cancer T-shirt I could find. It says, "I have cancer but cancer doesn't have me." I wore it to my first PSA appointment and asked my uro to tell me when I could burn the ugly thing. He said after 5 years of zeros.
Posted 1/16/2008 9:38 PM (GMT 0)
My Surgeon told me I had nothing to worry about after he saw my pathology report. Like everyone else, I'll sweat those days before the PSA tests.

I had a friend who had this tell me that he now doesn't think about it at all. He said he never thinks of it and it hasn't changed his life. I thought that was sort of cool until i realized that i wasn't so sure that I DIDN'T want it to change my life. As one the of the guys on here told me, he is now a kinder, more compassionate person because of it. I like that. I'd like to think of this as something that will improve me as a person.
Posted 1/16/2008 10:04 PM (GMT 0)

Hey Jim,

That's a great T-shirt! You have such a terrific attitude, it's contagious!

Paul, I believe everything that happens to us on this earth makes us who we are, the good with the bad.  Just look at all the good that comes from this forum?  Each and every one of us were searching for information on prostate cancer when we stumbled upon this wonderful site.

Twenty years ago this wasn't even possible. We've come a long ways BABY!

There is good in everything!

Marie

Posted 1/17/2008 12:01 AM (GMT 0)

Hey Y'all,

This subject has been hashed out here many times since I started on this board and I must say that not many have done as good as Paul in describing the way most of us here think. For me coming up on my 5th aniversery next summer I must say that what you folks said about five years makes me feel pretty good about my PC or lack there of. But then I have read on other sites about so many guys going along like me with zero after zero only to get to about 10 years and bingo, here comes Mr. PSA again. I hope I am not sounding too negative as I'm not. What happens will happen and I will deal with what ever comes along. Like you said, I'm gratefull for every day and all the wonderfull people and things in my life. For these guys who's cancer does return it really dosen't seem like a death sentance but another battle in the war. Some of these guys go on for a long long time keeping the enimy at bay and living their lives. These brave warriors give me hope along with all the advances that have come along and continue to come out every day in the war on cancer! Cancer is not what it was 35 years ago when my Dad died of PC at 51. If it isn't curable, it certanly is beatable at least until something else gets you! So my brothers let the zero's keep coming and for all of you who are fighting the battle, you are my heros!!!!!!!!!!!!!!!!!!! God bless all of you!

Your friend,

Pete

Posted 1/17/2008 12:57 AM (GMT 0)
I think if you asked 10 different urologists/surgeons, you'd probably get 10 different opinions regarding chances of post-op recurrence. Here's what my urologist told me

1. It all depends on the pathology report

2. The first year is critical. If the PSA remains 0 the first year then I can go from getting tested every 3 months to twice a year, and will continue getting tested twice a year for the rest of my life.

3. The chances for recurrence decrease as the years go by with each successive 0 PSA test result.

4. He did not like to use the word, "cured," but preferred the word, "survivor." Nothing is a 100%, not even a good pathology report. There's always a chance, however slight, that some small cells that escaped might lay dormant for years, and show up in a PSA years later. But, I shouldn't think about that since the chances were small from the studies he'd seen.

5. My chances for recurrence were "not likely," given my pathology report, but (and I hate that word "but") the only thing I had going against me was a post op Gleason 7 (3+4).

I put my faith in my father. He had a radical removal 11 years ago and has had a 0 PSA ever since. Hopefully it's like father like son.
Posted 1/18/2008 2:57 AM (GMT 0)

I think that you are absolutely, positively, for sure cured of cancer is when you die of another cause.  That's the nature of our disease.  Don't know for sure, till something else kills you. 

We're all gonna go, it's just a matter of what and when.  If it's other than prostate cancer, then you were cured.

Regards,

Bill

Posted 1/18/2008 11:55 AM (GMT 0)

I read where ct scans and mri scans can only detect tumors with at least 1 million cells, my question is how many pca cells does it take to make the psa abnormal.   I have seen on here where psa was undectable, but had radiation because of postive margins.  If you have recurrent pca after rp and have undectable psa for 3 years, then have a rising psa, does that mean that cells were left in the bed and it took a while for them to grow and produce psa, because there is no longer a prostate as an origin.  Every Dr. I saw said with my pre-op dre that I would have positive margins, yet here I am a year later and as the Dr. at Emory said, confounding the experts.  Is it gone, or are there some lurking waiting for that right conbination to grow again.  Right now I am going and living my life as if this is in the past just like a broken leg, fix it and get on with your life and try not to think or worry about it.  Of course with all the prostate and peeing commercials on TV these days, that is hard to do.  Ending I would say that the only one who has confounded the experts was God and all the intercessary prayers that were listed up!

Ron

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