I'm a little shocked

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clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2679
   Posted 2/3/2011 9:00 PM (GMT -6)   
At a social event this evening, I met a 69-year-old guy who said he had been treated 3  years ago for prostate cancer.  He said he had DaVinci surgery at Rush-Presbyterian in Chicago, and that it was very successful.  I asked  him if he's still having follow-on PSA tests, and he said yes, his latest was .1
 
Then....and this is the confusing part...he said his doc has him on Lupron (he said Lupon), and some other drug whose name he couldn't remember, but he thought it started with "buc."  He said his doctor told him these drugs were a kind of insurance to make sure the cancer doesn't return.
 
This man is a well known educator in our area.  He's been a school superintendent and a science teacher.  He has a reputation as a very bright guy.  But, I found his comments worrisome.  It sounds to me as if something's happening in the way of a recurrence, and yet he seems to think all is well and the HT is normal follow-on protocol.
 
He also said that the only side effect of all this is that he can no longer father children.  Maybe he meant complete impotence?  I asked about hot flashes, and he admitted he occasionally has them.
 
I'm thinking if my doc had me on Lupron, or any type of androgen deprivaton therapy, I'd want to know a lot more about what's going on than this man seems to know. 
 
Has anyone found this lack of understanding....lack of curiosity....lack of awareness to be common in PCa survivors?  Is his lack of awareness putting him in any kind of danger?
 

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 2/3/2011 9:10 PM (GMT -6)   
i know several guys who were treated for prostate cancer that don't have a clue about any of their numbers.  i think only a small percentage of guys take it to the extreme that we do on this forum.
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/3/2011 9:11 PM (GMT -6)   
Well if he thought he could father children after the DaVinci robot the I would be shocked.

I would bet that the drug that starts with "buc" is actually bicalutimide ~ the generic for Casodex.

But yes I see your point. But he is not the most uninformed patient I have seen. You asked "is his lack of awareness putting him in any kind of danger?" I don't think anyone can answer that. He may have a strong oncology team that is taking the appropriate steps. He has just decided to follow whatever protocol that team says he should do.

I have one of the top prostate cancer researchers in the business as my oncologist. He and I have been working together supporting prostate cancer survivors. He is respected by every well known oncologist I have met. I will likely follow his suggestions, but I will ask questions and try to understand his recommendations. But am I any better off than the next patient that walks in and barely understands his PSA score? LOL. I like thinking so...

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/17/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 2/3/2011 10:16 PM (GMT -6)   
Sometimes, when someone just doesn't want to talk about it, they give you the short, easy story and close the door on it.

In all likelihood, this gentleman knows exactly what his situation is...But it's not on his list of polite conversation topics..

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 831
   Posted 2/3/2011 10:17 PM (GMT -6)   
I met a guy who was 75 and had brachytherapy 3 years ago.  He said his Dr. told him he "guaranteed the seeds for 10 years."  Meaning he would be cured for 10 years.  I told him I had RP and he said "Oh then you have nothing to worry about."  As if RP cures you.  He did not know his Gleason score or PSA before BDR or it now.
 
I didn't understand it either.

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2358
   Posted 2/3/2011 11:47 PM (GMT -6)   
In my personal experience, those who post at this forum are the rare exceptions, rather than the rule. Most people,and especially men, do not want to know much about their medical status. I sometimes wonder how involved men are whose wives post here. Maybe she is the only one interested in gaining more knowledge about prostate cancer, and he is either sticking his head in the sand or couldn't care less--"Just fix it"

fertree
Regular Member


Date Joined Jun 2010
Total Posts : 118
   Posted 2/4/2011 7:26 PM (GMT -6)   
I have a friend who is very bright and accomplished in the business world. He had PCa at age 59, a year or so before I had it. He had Da Vinci surgery and after I was diagnosed and started talking to him, I realized he knew NOTHING about his cancer. PSA before and after? Gleason grade? How experienced was your surgeon? Positive margins? The list goes on and on. So no, there are plenty of people who hear they have prostate cancer, go into denial, learn nothing, and hope for the best. I agree, we may be the exception, rather than the rule.
PSA 2.1 on Avodart
Biopsy: 1 of 12 cores positive >5%, Gleason 8
open RP: 05/10/2010 Dr. Gary Steinhoff, Victoria BC
Pathology: pT2c Gleason 3 (80%) 4(20%)=7, no lymph invasion, no extraprostatic extension, negative margins, tumor 5% of tissue.
Nerve bundles removed (based on original Gleason 8)
Incontenence: 6+pads for 9 weeks, dropped to 3 pads in 1 day.
First PSA >.01
Urethral Stricture requiring additional surgery Aug 20 (darn! If I'd known I was 80% Gleason 3 I could have gone for the robot, saved the nerve bundles and bypassed the stricture issue! In my next life, I'm having that biopsy sample checked twice!)

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 2/4/2011 7:36 PM (GMT -6)   
this is a good time to toot your own horn guys !!

- what has been said with this postings is more the norm - let the docs do the job and keep his head in the sand - and the posters here at HW are a rare treat.

- I applaud the men on this site who have taken control of their bodies and doing their best to beat PCa and hopefully make others aware of it due to their actions and determination -

I applaud the wives of the men with PCa who write here - who are doing their best to help their husbands/spouses combat this confusing disease called prostate cancer!

-now if we could get more "alice and marty" posters with marty posting as much as alice....

keep up the good work -

hugs
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/12/11 - TBA

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 2/4/2011 8:11 PM (GMT -6)   
Perhaps ignorance is bliss. When I underwent radiation 9 mos. after RP, I was still full of questions, and the techs said I was the only one asking about anything. I even asked questions they couldn't answer and referred me to the head doc. Knowledge is power, my friends.

Bob
AGE:58

Dx: October,27, 2008(the day after my birthday)
Psa 14.5,Gleason (4+3), all scans negative. Biopsy, 4 of 12 positive. DaVinci, 1/19/09. Confined to prostate? No lymph node involvement, all margins clear. 8 wk. Psa<.01,6mon .1,9 mon. .2. Began IGRT 10/09, finished.12/09. Since then,.1.12/22/10. <0.10, trending down. See you in one year, Doc.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/5/2011 9:21 AM (GMT -6)   
Ignorance is not bliss when people lie to you or profit off your demise and future death..is my thinking. This guys doc is covering his ass and cashin at the same time. Makes him look like a God, low psa and all is good. The guy could have the exact same psa stats without even doing surgery???? But let's not tell the guy that could have happened.
 
My friend Rick K is at year 15 right now...no surgery...ADT3 per Leibowitz protocol...rebiopsied 3 times and just recently by Doctor Fred Lee color doppler ultrasound biopsies....no cancer found. So, even if he isn't cured...is he stupid for living normal and can still do 'all' treatments for PCa if and when he elects too??? How many docs mention this option??? Sure it is not for everyone...which can be said for every treatment in PCa. All treatments have a place in PCa...knowledge is real power.  Truth and reality on PCa needs to be publically aired.
 
There is doctor bias, agenda and non-disclosures to suit their needs, not all are like that but it is common enough to puke.  I got lied to a couple times, fired a couple docs too.  Hind sight was exactly what I needed too.  Need more examples of docs statements of less than truthful disclosures, I got a few of them handy.

Question everything and all the time...do we see why?

Post Edited (zufus) : 2/5/2011 7:30:37 AM (GMT-7)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/5/2011 10:18 AM (GMT -6)   
My friend who sits next to me in church and is a well educated man, had his robotic surgery with the same doctor 2 weeks before mine doesn't know what his Gleason score was nor does he know what his pathology report was.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 495
   Posted 2/5/2011 11:07 AM (GMT -6)   
It is very simple, you see. Prostate cancer is the GOOD cancer. Thus the doctor will take care of everything and you will be a bit uncomfortable, a little lighter in the wallet, but then you can just forget everything and go on about your life because the GOOD cancer does not really threaten any man. Everyone knows that. Even the American Cancer Society does not recommend screening so the GOOD cancer must be benign and harmless. Why treat it as anything different than asthma. We are fortunate. We have the GOOD cancer so no one wants to hear about our anxieties and our futures. We have yet to deal with a REAL disease. Come back and talk to us when you have trouble that we recognize.

(Irony and sarcasm intended and created by real life experiences from others which support the view above.)
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