No blue ribbons / No 5K / No commercial - but one life spared

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Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3057
   Posted 3/28/2011 6:42 PM (GMT -6)   
Since I have been diagnosed I have had high hopes to spread the word about PC in a big way and possibly have an impact on thousands of people.  To date, I have not found the proper way to do so.  Therefore, at times I talk to guys and tell them personally what they should do to protect themselves.  Amazingly, many don't care to listen..or at least don't seem to be interested.
 
Today was different.  Today I had an impact on one of my employees.  He is in his late 30s I believe, newly married and just had his first child.  He had no idea what a prostate was, what is a PSA is, etc... a normal 30 something year old. 
 
He thanked me for being frank and told me that he would take proactive steps yearly for the rest of his life in this regard (and also to take control of his general health).  I just recently gave him a promotion.  He doesn't realize it, but what he learned today (and the action he is going to take) is way more valuable than any promotion ever will be.
 
I may not touch thousands of people's lives, but I am very confident that I have at least helped one person avoid this for their life and especially in his 40s.
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05
March, 2011 .09

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/28/2011 6:47 PM (GMT -6)   
Good deal, Jerry,
Being young with this disease will help touch the younger guys. I too am able to "connect" with younger men because I am still younger than most with this even after four years.

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 ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 3/28/2011 7:23 PM (GMT -6)   
Having someone listen to your story can and does make a difference, not always, but sometimes and sometimes is good enough.Keep up the good work.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7month post SRT PSA .2

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/28/2011 8:13 PM (GMT -6)   
Jerry:

I learn long ago in retail , just like in that old "herbal essence" shampoo tv commercial - I told one friend, yeah and he told one friend, yeah yeahand so on yeah yeah yeahand so on.... yeah yeah yeah yeah

- and it was translated to customer service ... if it was bad - they told 20 friends - and if it was good, they told 10 ....

-but in your case, you did not influence only one person,yeah to help him to take ownership on his life, and his health... 'cause he will tell someone and they will tell someone , and so on and so on and so on....
yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah
-but, it may not be today, maybe not tomorrow, but one you could easily have saved someone's life - and for that you are a HERO...
yeah yeah yeah yeah yeahyeah yeah yeah yeah yeahyeah yeah yeah yeah yeah
hugs,
BRONSON

p.s. I know the groovin' guys are a little over the edge - hey! - you're worth it.
Age:55 -gay with spouse of 14 years, Steve -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:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

Post Edited (tatt2man) : 3/28/2011 8:17:00 PM (GMT-6)


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 3/28/2011 8:21 PM (GMT -6)   
yes, good job. I too have no issues talking to anyone about it. Last friday at the gym in the locker room while someone asked me about it I took my shirt off and started showing my incisions pointing out how small they were. I soon had a bunch of people looking and listening.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 3/28/2011 8:28 PM (GMT -6)   
Jerry, Back in January i visited my sister in Florida and asked my 50 year old nephew if he ever had a PSA test and he said NO. I discussed the issue of PCa and the importance of getting PSA checked annually. He called me 2 weeks ago to tell me that he had his PSA checked and that it was below 1.
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, 21 months) undetectable
Latest PSA test (2 years) <.008 ?

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 3/28/2011 9:23 PM (GMT -6)   
All of my friends have either had PSA tests or are scheduled for one soon.My turn of events has scared the crap out of em. Can't tell you how many times I've heard" I get the digit test every year" And I tell them my digit test was normal. Don't rely on that alone.
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

Sparrowhawk
Regular Member


Date Joined Mar 2011
Total Posts : 130
   Posted 3/29/2011 10:22 AM (GMT -6)   
Jerry, great job you're doing by reaching out.
I have told my family members to let anyone who is willing to listen about my condition.
There are a large number of Males in my family tree, I want to inform them that they need to have regular check ups. I've told them to get tested- checked out early rather than later.
We may never make a huge difference in the number of people we inform, but one by one spreading the word will make a difference.

summer boy
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 3/29/2011 10:41 AM (GMT -6)   
I told someone I know, he's not a friend ,not a coworker, just run into him and it came up. He did not even say a thing, totally changed the subject. Then I found out he told a bunch of people. He could not talk to me but he told every Tom, Dick and Harry he run into. He is older then I am by ten years or so, I'm 50. I think the older generation made this a closet disease and the younger generation is spreading the work so that some else is aware of it, maybe more educated and better prepared battle it if they get it. Just a thought!!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/29/2011 10:41 AM (GMT -6)   
Jerry,

I do the same thing in my daily life, most recently trying to help my neighbor with a new PC dx. In my journey, I have spoken to other men, on a one to one basis, of my situation, but more importantly, to see if they have any PC awareness at all. I shouldn't be astounded, but am, at how many men, just like I was, are totally clueless.

If all of us just reached one other man, and helped just one person get tested or at least aware, a lot could be done.

It wouild be nice if PC had 1/10th the media coverage of BC, but that's out of my league to understand or know what to do about it.

Good job.

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 marg
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
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,

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 3/29/2011 11:40 AM (GMT -6)   
Don't mean to rain on all your parades, but in March 2009 Dr. Peter Bach, a physician and cancer epidemiologist at Sloane-Kettering said in relation to the major study of prostate cancer testing involving about 250,000 men-
 
"one way to think of the data is to suppose that a man has a PSA test today. It leads to a biopsy that reveals he has prostate cancer, and he is treated for it. There is a one in 50 chance that in 2019 or later, he will be spared death from a cancer that would otherwise have killed him. And there is a 49 in 50 chance that he will have been treated unnecessarily for a cancer that was never a threat to his life."
 
Bach is not alone- many others agreed with him.
 
We all know about the devastating side -effects associated with the treatments.
 
I am not sure that you are doing anyone a favor in preaching about the benefits of testing for prostate cancer. For many its a highway to nowhere.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."

Sparrowhawk
Regular Member


Date Joined Mar 2011
Total Posts : 130
   Posted 3/29/2011 12:13 PM (GMT -6)   
mjluke: Kinda sounds like damed if you do, damed if you dont?
Think I'd rather take the 1 in 50 chance of being spared death, then not doing anything else and taking a dirt nap!

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 3/29/2011 12:21 PM (GMT -6)   
MJ: two thoughts in response to your thought-provoking post: First, the odds of having a prostate cancer that will kill you is not 1 in 50 for ALL prostate cancers -- depends on the clinical stage, psa at diagnosis, maybe psa velocity, gleason score, size of tumor, maybe location of tumor, maybe ploidy analysis, etc. So person can get tested and then decide how to proceed, based on his (and his doc's) best guess as to the significance of the cancer. Second, those of us who have seen someone die of metastatic prostate cancer might like very much to avoid even a one in 50 chance of it.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/29/2011 12:28 PM (GMT -6)   
mj - while entitled to you opinion, of course, not sure you would have many takers here on your view.
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 marg
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
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,

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 3/29/2011 12:41 PM (GMT -6)   
Hi Guys:
 
A.  I totally disagree with MJ's take on this and we have debated this testing issue many times on HW.
 
B.  Good job Jerry!  You have demonstrated another good reason to be open about our disease.  Since I was diagnosed 2 1/2 years ago, I have received MANY calls from friends or friends of friends who know I am willing to share.  I am paying forward for the willingness of friends of mine to share when I was a scared ****less newbie with this disease.  New patients find a lot of comfort in talking with someone who has been-there-and-done that...not only on HW but person-to-person. 
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 3/29/2011 2:44 PM (GMT -6)   
In the spring of 2009 I was trying to decide on what my next step would be after getting the biopsy results- I obtained a lot of information from this forum- and a great deal of support for which I am grateful.

Of course I did a lot of research and talked to anyone I knew who had experience with prostate cancer treatment, particularly anyone who had brachytherapy I also called a guy I grew up with who is now a very well respected thoracic surgeon who does a great deal of lung cancer surgery. We had a coffee and I told him about my diagnosis and that I was leaning toward brachytherapy. Although not a prostate cancer specialist it was reassuring to me that he felt I was making a reasonable decision.

I also had some cholesterol issues and we discussed those.

WE talked golf for awhile and at the the end of our chat I asked about his PSA and cholesterol levels. He said that he had no idea what they were and he didn't sound interested in finding out. I probably should have asked why but I didn't.

By the way he is very fit and and in fact had just come from the gym, so its not as if he didn't care about his health.

I am not certain that this is common among cancer surgeons but I thought it was very interesting.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3057
   Posted 3/29/2011 2:49 PM (GMT -6)   
Bronson - I enjoyed the groovin guys. Thanks

MJ - interesting, but could you please include the groovin guys so I could better understand?

On a serious note, I think I will stay with my current preaching of getting PSA checked and a DRE at least once a year, eat healthy, exercise and buy life ins. The mixed messages that are out there cause men to do nothing. Being proactive about your health can't be bad.

Newer technologies will soon allow for better screening and diagnosis. They will soon figure out which PC is lethal and which is not before treatment. Until then, I will do as I'm doing.

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 3/29/2011 2:59 PM (GMT -6)   
We're a biased group here, including me.
 
I'm more than happy to talk about the disease with anyone who asks.  But I don't tell them to get tested.  I think that's an individual decision.
 
The stats mj quoted and the current opinions from the medical community certainly put the question of the propriety of testing on the table.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/29/2011 3:59 PM (GMT -6)   
The stats that MJ posted are from the pair of studies posted in the New England Journal of Medicine that raised quite a bit of controversy. In one study it showed no benefit in the US of screening and in the other it showed a substantial benefit to screening in Europe.

The actual number used in those studies showed that after a median of 9.2 years it would take screening of 43 men to save one life.

But I don't like short term studies because they do not mature enough to provide useful data. And this one proved to be exactly that. Have a look:

prostatecancerinfolink.net/2011/02/13/truth-in-screening-how-many-men-to-screen-and-treat-to-save-a-life/

Simply put, using the exact same study and extending the collected data by about two and a half years, we have stats that almost completely disagree with the first release of the study. And it is my contention that if we look at it again in five years we will see even more impact on the data.

So MJ's post was correct ~ two years ago. But just like all those other screening, active surveillance, and local therapy studies ~ the criteria should be extended to the end point of mortality.

Tony's Soapbox ~ Anything short of that is a story about PSA control and not survival benefit. I do not contend that we need to have population based screening, but rather that we need to be doing smarter studies...

Tony

Post Edited (TC-LasVegas) : 3/29/2011 4:03:26 PM (GMT-6)

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