Alarming statistic from National Cancer Institute's site

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I use to be a fish
Regular Member


Date Joined Mar 2011
Total Posts : 57
   Posted 6/14/2011 9:25 AM (GMT -6)   
Yesterday I was reading the NCI's site about treatment options for Prostate Cancer.  One of the questions was about needing further treatment in the future.  The NCI stated that PSA levels will rise within 5 years in 1 out of 3 men who have undergone surgery and 1 out of 3 men who have undergone radiation!  I thought I wasn't seeing clearly, so I re-read it and re-read it again this morning.  That's a scary figure!  Does the Prostate Cancer journey every end?
 

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/14/2011 9:42 AM (GMT -6)   

It depends on which end of the scale you're on smhair

So that why we try to make to most of if the days we have....


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 6/14/2011 10:26 AM (GMT -6)   
You want "alarming"? Run your numbers through the Sloan Kettering Nomogram. Or the Johns Hopkins Calculator.
You'll be as nervous as the day you watched them draw birthdays for the Selective Service lottery.
A glass of chilled Riesling will take the edge off the experience.
Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

Tikvah
New Member


Date Joined Jun 2011
Total Posts : 10
   Posted 6/14/2011 10:28 AM (GMT -6)   
Came across an interesting stat of 'only' about 75% cure rate by the BEST surgeons - not sure about the radiation cure rate.
Presumably the rate might be much lower for run-of-the mill surgeons? Yikes!

A question that arises from this stat is how aggressively should one pursue Dx and Tx for PCa if you're told you have less than
35% chance of having PCa - from the total PSA number alone?

I'm currently deferring the Good Doc's reco for a Bx (based solely on PSA in the 9s) given a fPSA of 30%...and other factors.

But yes, the lead post's question remains: the Prostate Path is (hopefully) long & quite treacherous...there appear to be traps
that are easy to fall into and very, very few 'definite' answers.

Good advice from the moderator, above - to which I'd add study, study, study - there is a LOT of research going on and many
hopeful solutions on the near horizon.

I use to be a fish
Regular Member


Date Joined Mar 2011
Total Posts : 57
   Posted 6/14/2011 11:04 AM (GMT -6)   
My husband was also told he only had about a 30% chance of having cancer.  His PSA was 5.1, however his free psa was between 10-13%.  After repeatedly checking his PSA for over a year and a half and radically changing his diet - eating tons of raw vegetables, eating tons of raw garlic ( you can imagine the smell from both ends), lots of soy, lots of selenium, lycopene, vitamin E, green tea, he couldn't take it any more and decided on the biopsy.  Yep, he has cancer 4 out of 12 samples positive.  Gleason 6. 

rcroller
Regular Member


Date Joined May 2011
Total Posts : 326
   Posted 6/14/2011 11:06 AM (GMT -6)   
Tikvah, don't take this the wrong way...It's your body...your decision...but here's how it went down for me.  My doc gave me a 25% chance of having PCa prior to biopsy with a PSA of 3.5. He had to talk me into it because frankly I just didn't want to do it.  Biopsy revealed PCa, G-8. So much for playing the odds, at least in my case.
Age 53- PSA 2/11 3.5
4/21/11 BX Path Report: 3 of 12 Left PCa , 3+3, 3+4, 4+4
4/29/11 Received PCa DX, G-8
5/18/11 open RP Performed, Right nerve bundle spared
5/24/11 Post Op Path Report: G-7(4+3) 7%, pT3a N0MX, EPE, PNI+, SVI-, Left margin <0.1mm from inked margin
6/1/11 Cath removed, Incontinence-No, ED-Yes.

HD_Rider
Regular Member


Date Joined Apr 2011
Total Posts : 414
   Posted 6/14/2011 11:32 AM (GMT -6)   
I'm sick of reading statistics. You'll find them favoring one thing or another. Sure, I'd like to know my odds of recurrence, but you can't just rely on the prevailing national statistics or this chart or that nomogram.

I'm of the position that every case is unique to the individual and YOUR chances of recurrence are based largely on YOUR particular case (size of the cancer, how long it's been growing, where it's located, DNA type, lab results, your overall health, age, whether the sun is shining that day, etc.).

Just get your cancer treated knowing that you may need further treatment later. Deal with the blows as they come; don't waste your time assuming the worst. Nothing good comes from waiting or looking for bad news.
John (HD_Rider)
Age: 49
PSA: 3.5, 6/07
PSA: 4.5, 3/11
Biopsy, 12 cores: 04/13/11
Dx: 04/19/11
Gleason: 3 cores at 3+3=6 and one core at 3+4=7 (primarily on right side with <5% on left side)
DaVinci: 06/09/11

cantexplain
Regular Member


Date Joined Jun 2010
Total Posts : 74
   Posted 6/14/2011 11:43 AM (GMT -6)   
Worried Guy - the selective service lottery refererence was right in my wheelhouse.  I was in a dorm room at Ohio University the Spring of '72 - Just about every one chipped in a buck to split for high and low numbers.  My roomie was #360 - he got half the pot...I was number 11 and walked around campus for a few days with a pocket full of one dollar bills.  Then the draft notice showed up in July that summer!

Age at Dx: 56
DaVinci Prostatectomy: 10/28/09

Stage: T2C

Gleason - 3+4 = 7

Prosate: 52 grams

Incontinence - absolutely at first, better with time and kegels

ED - Indeed

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/14/2011 12:09 PM (GMT -6)   
HD,

I concur in your thoughts on this. I have said many times that while we must maintain vigilance in following our own PCa journeys, taking the follow-up tests and making decisions as they are needed, we must get on with the living and enjoyment of life.

They are only STATS.

I traveled a few thousand miles to be treated by on of the best da Vinci surgeons in the world. My lowest PSA ever following surgery was .40.

Barely 3 months from surgery, at a PSA of .63, I underwent IG/IRMT that was planned by one of the best ROs at MD Anderson. He has since went on to become the head of Radiology of the UCLA Medical Center.

4 months following radiation at a still rising PSA that had gotten to 1.6, I underwent MET radiation therapy.

At barely 1 year from that I am now seeing a PSA of 4.9.

None of these fall remotely into the realm of normal STATS.

Every Day is A Bonus and I continue to live all of them to the fullest. I take the tests and make the decisions as needed, but I don't put any stock into the stats about anything that may pertain to me because I have shown that they don't apply in my situation.

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09 Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
PSA .6 IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8
5/19/11 PSA 4.9

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 6/14/2011 12:14 PM (GMT -6)   
Hey Cantexplain
I figure quite a few of us fit into that category. I was a year ahead of you. I still recall that sick feeling as they were drawing the numbers. Very much like doing the nomographs. Back then my number was in the low 190's - a little past even odds. Same as my nomograph.
Maybe I will get lucky twice.
Jeff

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/14/2011 2:20 PM (GMT -6)   
Sonny - I fully agree with your post, with my own PC journey, I have been on the wrong side of every stat so far, lol.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3742
   Posted 6/14/2011 5:26 PM (GMT -6)   
They have statistics to prove virtually anything you want "proved"...They can make you feel very good or they can make you feel very bad, depending on which ones you select to make your point...

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 6/14/2011 6:09 PM (GMT -6)   
I used to be a fish -

i fully understand what you are posting. I'm always thinking of the worst myself and looking for guarantees that nobody can give me even though everyone tells me not to worry anymore.

That said, I think we need to find a way of stepping back and away form all this. I love this site, I think it is incredibly valuable but sometimes there is too much in our PCa world that creates negativity.

I have family members who beg me to not read stuff online about PCa. They think that distancing yourself from this whole new reality of ours is the best way to approach it and move on. This might explain why its really hard to find people who are doing great on medical forums. Maybe we are punishing ourselves when we constantly dig around the internet for studies and articles that we hope can give us some kind of temporal guarantee.

I'm such a sucker for punishment that I even watched the Javier Bardem movie "Biutiful" the other night about a man in Barcelona who dies of advanced (edit) prostate cancer. It was so difficult to watch. My father had seen it and knew I was watching and called me begging me to turn it off. He just didn't see the benefit for me to see that.

So, remission, cured... I don't know. But I do know that no matter how impossible it might be for some of us because of our personalities, It might just be best to go to our scheduled doctor visits but live as if we didn't have anything anymore. If it ops up again we'll deal with it as our doctors suggest we should and keep hoping until we can.

I'm sure a few will misinterpret this post. I love this site, but perhaps there is something to stepping away from all this and trying to move one in order to try and stop worrying so much. I'm not there yet but hope to be soon. I just spent ten days without internet and it was great.

Post Edited (davidg) : 6/14/2011 6:28:20 PM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6948
   Posted 6/14/2011 6:37 PM (GMT -6)   
Davidg,
 
Not often we agree, but here I think we do. If one is so fortunate as to have a contained PCa, and little ED or incontinence issue, they should not be sitting here unless there is a desire to help others down the path. But that is not without its own perils, as there are those we try to help who give us pause to think about how our own future will go.
 
This "place", although electronic, is a corner for those of us who were not so fortunate. If I had the leeway to presume that all would be well, I would. It would not take a half-heartbeat. If I could head off to Rome, I would be gone already. I will say I envy you that little bit of good fortune.
 
 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/14/2011 6:41 PM (GMT -6)   
There's a very good movie, staring Peter O'Toole, called Venus, made in 2006 I believe. And in the movie, he is dying from advanced prostate cancer. Actually an uplifting movie, as his teenaged niece moves in with him, and then there is the huge generational gap difference between the two. And in the movie, each learns from the other. He dies at the end, in the manner he would have chosen. It was a good contrast type movie, well written and acted.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
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