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NKinney
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Date Joined Oct 2013
Total Posts : 1159
   Posted 4/16/2018 2:28 PM (GMT -6)   
9-years since treatment

I had to look-up the date (because I didn't remember), but I confirmed that it was 9-years ago that my prostate—with fairly small amounts of favorable-intermediate risk prostate cancer—was surgically removed. My how times have changed since then.

Back then, the focus of “due diligence” was centered, first, on a decision between treatment modes (mostly surgery or radiation), and then on finding a highly experienced DaVinci robot surgeon. Both were pretty straight-forward. As a younger man with a favorable-risk case, I kept hearing “you have many treatment options.” My treatment mode decision—the first decision—was largely based on the fact I had so many years ahead of me that I didn’t want to deal with the “late-term” side effects of a radiation treatment years after putting PC behind me—I didn’t want to be leaking poop when I was 65 years old, so I picked surgery. The second decision turned out to be easy, too, because as it turns out I had not one but two NCI-designated Comprehensive Cancer Centers within 40-miles of my home. The only remaining question was how soon could I get scheduled.

Today, nine years after my treatment, the focus of one’s “due diligence” has shifted to the question of whether immediate treatment is even needed for the favorable-risk cases like mine. Biopsied at age 49, I had only three (of 12) positive cores—only one with 3+4, and the other two with 3+3. My PSA was just barely into the “gray zone” at 4.1 ng/mL, and my DRE was negative.

What I didn’t realize at the time was that we were at the height of the PC overtreatment epidemic—some of the estimates at the time were that 60% (incredibly high numbers) of procedures performed at the time were “overtreatment,” which carries massive physical, psychological, and economic costs. When this first came more-clearly to light, even attempting to measure the grossly wasted human and financial costs was considered almost treasonous in the cancer community...sad commentary, in reflection.

I missed—by merely one short year—the first wave of the tsunami "wake-up call" which hit the Urology/Medical-Industrial Complex eight years ago on when Dr Mark Scholz published his landmark book Invasion of the Prostate Snatchers. For the first time in a significant way, the profession’s own thought leaders began questioning their peers—this time, not by presenting at a medical conference or publishing a medical journal editorial, but instead going right to the patient himself. The book presented the perfect storm of clinical evidence and economic reality which challenged surgeons and ROs to examine the evidence, examine their souls, and start to carefully look at every new patient asking, before anything else, “Is treatment really needed at all?”

The next tsunami wave to follow was six years ago in 2012 when the USPSTF updated their previous (2008) “I” grade (“Insufficient evidence”) recommendation for prostate mass screening to a “D” grade (“Moderate to high certainty that harms outweigh benefits”). If you missed Scholz's book, then this was the unmistakable wake-up call to prostate cancer overtreatment. The message was, essentially: “If you guys in the medical community can’t self-police this, we’ll step in to exert our influence until you do.” The USPSTF heightened awareness by pulling together the data on the issue of severe complications and patient suffering from overtreatment of indolent PC cases. They provided a teachable and actionable moment for the medical community to improve targeting of PSA screening, reduce over-testing and improve the process of patient education on the risks of overtreatment from PSA screening.

So it’s with a great deal of marveling that I look back at the extent and rapid rate of change that’s taken place. Today, for anyone with favorable risk PC, the first look is at AS. Knowing then what I know today, I would not have sought immediate treatment. Today, my first step (after pathology 2nd opinion/confirmation) would be one of the genomic analysis tests (Prolaris, Oncotype Dx, or Decipher) to help decide whether treatment was necessary or not…this is the real question today.

Looking ahead, the USPSTF is considering changing their “D” grade (“harms outweigh benefits”) recommendation to primarily a “C” grade (“clinicians should help men make informed decision about PSA screening”) because of the extent of the changes that they have helped bring about. I’ve posted this important point several time before: It was true that at one point in time it took treating 50 men in order to save one life. BUT, that assumed that you are going to treat everybody with PC. But following a risk-adjusted approach and only treating those that need to be treated, then the survival benefit is astronomical. We’ve make radical changes in 9-years but we aren’t to the point of “astronomical benefit” yet…but we are getting there.


Anyhow, 9-years…a lot has changed in the PC world in that time (and in my personal world...not the topic of this post).

Post Edited (NKinney) : 4/16/2018 3:18:34 PM (GMT-6)


Tall Allen
Elite Member


Date Joined Jul 2012
Total Posts : 10278
   Posted 4/16/2018 2:48 PM (GMT -6)   
Congratulations! I'm amazed that the odds of fecal incontinence, which is an increase of 5% over baseline (and, if it occurs, is almost always acute and transient, almost never chronic) outweighed the risk of impotence and incontinence from surgery in your decision. But that just proves that each of us has his own priorities and risks he is willing to accept. It also underscores why we should never ask a doctor what he would do.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/16/2018 3:01 PM (GMT -6)   
Tall Allen said...
Congratulations! I'm amazed that the odds of fecal incontinence, which is an increase of 5% over baseline ...

Appreciate it!

Not mentioned above in my summary, but something I also ran across in my decision-making "due diligence" was multiple reports of how late-term radiation effects are under-reported in the PC literature...for a variety of rationally understood reasons. I didn't want to start dealing with a new (and gross) issue so many years after PC treatment...I figured that by age 65 (which seemed like a long way off in the distance then, less so now), I'd probably have other "newer" issues to deal with.




This month also happens to be celebrating my 10-year anniversary at my workplace (yes, I was diagnosed within my first year of my "new" job at the time), and the company offer some very nice "awards" to mark the occasion. I wonder who sends out the 10-year PC awards?

Post Edited (NKinney) : 4/16/2018 2:06:43 PM (GMT-6)


PDL17
Veteran Member


Date Joined Oct 2011
Total Posts : 504
   Posted 4/16/2018 3:16 PM (GMT -6)   
Thank you for your contribution in the battle to keep our new patients from making a huge mistake if they are low risk.

Paul

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/16/2018 3:29 PM (GMT -6)   
PDL17 said...
Thank you for your contribution in the battle to keep our new patients from making a huge mistake if they are low risk.

Paul



Thanks for noticing. I'd like to say: "My work here (in that regard) is done." Maybe at 10-years.

Post Edited (NKinney) : 4/16/2018 3:08:08 PM (GMT-6)


InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8798
   Posted 4/16/2018 4:06 PM (GMT -6)   
congratulations on nine years.

Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2313
   Posted 4/16/2018 5:02 PM (GMT -6)   
Thanks for your post and congratulations on 9 years. My history mirrors yours in many ways.

And I echo Allen's advice: NEVER ask a doctor what he would would do! If nothing else, my experience with low-grade prostate cancer has taught me to pause and reflect and research before deciding on a course of medical action regarding anything that does not pose an immediate threat to my health. In the last decade, that point-of-view has served me well.
Age 69 Diagnosed G6, age 57
Prostatectomy (open)
PSA <0.03 for 11 years

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5877
   Posted 4/16/2018 6:53 PM (GMT -6)   
A lot us are entering the 10 year mark...now whadda we do?? Hope...I reckon
Congrats...
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...

GoBucks
Regular Member


Date Joined Jan 2018
Total Posts : 93
   Posted 4/16/2018 7:04 PM (GMT -6)   
Wow, on the day I make my first posts you have a 9 year anniversary. I will enjoy every day until someone posts on my 9th anniversary.
Dx 5/18/17
11 of 12 positive; 1 3+3; 2 4+4; rest 7's
RALP 7/27/17; 3 of 10 nodes positive
refer to RO; need PET scan per RO; shows multiple bone mets; cancel radiation
Local MO and Cleveland Clinic MO say new gold std = ADT + Zytiga +Pred
Cleveland Clinic upgrades path to G9
psa post op 8/31 0.15 10/25 0.24 11/9 0.28; lupron shot 11/17
psa 12/8/17 0.13; start zytiga 12/15; psa 12/28 0.03
4/4= <0.0

Pratoman
Forum Moderator


Date Joined Nov 2012
Total Posts : 5688
   Posted 4/16/2018 8:43 PM (GMT -6)   
Very nice post Norm. Congratulations on 9 years.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .06.
Decipher test, low risk, .37 score
My story.... http://tinyurl.com/qgyu3xq

SueCAll
Regular Member


Date Joined Jan 2015
Total Posts : 268
   Posted 4/17/2018 4:02 AM (GMT -6)   
Congrats on 9 years! Great post!
Age 63
PSA test in December 2014 16
January 16, 2015 - Biopsy shows Gleason 8, Clinical Stage T2a, 5 out of 12 cores positive
February 4, 2015 - Had bone and CAT scans, showed tumor contained to prostate
Switched urologists and met with RO, recommended for IGRT
Treated with hormone therapy and IGRT
So far, so good!

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2449
   Posted 4/17/2018 6:32 AM (GMT -6)   
Congratulations on 9 years!

With all that has transpired in the last few years your comments are quite important. Thanks for sharing your thoughts, and reinforcing a valuable perspective.

My treatment decision wasn't terribly complicated in 2013; there was no doubt about needing to treat what I had. My oncologist said, "You're the guy we're trying to find through screening.". Caught possibly just in the nick of time.

For so many though, I'm glad to see AS becoming widely accepted. Accent on the word "active". My dad would very likely have been fine without treatment. The permanent and complete ED he suffered from surgery (2002, age 72) was quite devastating to him. Surprisingly, it was also unexpected. He had no anticipation of that being an outcome even though it is quite common. He didn't communicate well with doctors anyway, and his urologist must have downplayed it significantly. We didn't talk a lot about it, but apparently nothing helped.

Anyway, here's to many more years for you!
55@Dx on 4/16/13. G9(5+4), cT3a by MRI.
IGRT - 44 sessions (79.2 Gy)
ADT2 - Lupron+Casodex (3 yrs)

PSA <0.1 : 8/13 - 5/16; steady at 0.7+/- 0.1 since 3/17

My Story

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/17/2018 8:35 AM (GMT -6)   
Thank you all—Andrew, Tim G, Bozo, GoBucks, Pratoman, SueCAll and Redwing—for your acknowledgement.


Redwing, thanks for adding that additional insight about your dad's case from 2002, too. The origins of the overtreatment epidemic make for another interesting history lesson dating back even a decade or more before that...maybe a topic on another day. But for years it was a lesson that had to be re-learned everyday with newcomers. I'm still stunned to think back to a post I read from summer 2015 where a (newbie) HW member posted: "Overtreatment, Shmovertreatment." Stunned.

garyi
Veteran Member


Date Joined Jun 2017
Total Posts : 844
   Posted 4/17/2018 8:51 AM (GMT -6)   
Congrats on 9 years and thank you so much 😊 for both your summary and your always most valuable and encouraging counsel. It’s helped so many of us.

There has been so much progress with this maddening disease, and the journey is far from over.

Well done, Norm!

Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 725
   Posted 4/17/2018 5:07 PM (GMT -6)   
Norm ,
Congrats, way to go, very nice anniversary. Very thoughtful post. You are a fountain of knowledge for us all, I know you have been through a lot, and mentorship is your strength!.
Dan aka wings
DX PCa-2012, age 57=GS 3+4=7 & 4+3=7 w/mets PSA=71.2 start Lupron PSA=,

1/13=2.7 2/13=0.7 3/13=0.2 6 /13=0.1
9/ 13=0.7 11/13=1.4 12/13=2.7 4/14=2.7
6/14=3.8 8/14=5.2 Zytiga:
9/14=1.4 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06 8/17=<0.06 12/17=<0.06 4/18=<0.06

Post Edited (Wings of Eagles) : 4/17/2018 10:05:21 PM (GMT-6)


NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/17/2018 5:24 PM (GMT -6)   
Thanks garyi and Wings.

Gary, we can all keep this Gandhi quote in mind, too, about progress: "Honest disagreement is often a good sign of progress."

Dan, as you know, Paul told the people: “God will never give you more than you can handle”...or something like that.

Post Edited (NKinney) : 4/17/2018 4:29:35 PM (GMT-6)


garyi
Veteran Member


Date Joined Jun 2017
Total Posts : 844
   Posted 4/18/2018 8:50 AM (GMT -6)   
Thanks Norm 🙏

Coming together is a beginning; keeping together is progress; working together is success. ...

Progress is impossible without change, and those who cannot change their minds cannot change anything.

For whatever it’s worth...
72years old @ Dx, LUTS for 7 years
Ulcerative Colitis since 1973
TURP 2/16, G3+4 discovered,
3T MRI fusion guided biopsy 6/16
14 cores; G 3+3, one G3+4
RALP 7/17 G3+4 Organ confined, but...
<1mm positive margin on Epstein check
pT2c pNO pMn/a
98% dry, ED minimal
ercMRI & DCFPyL PET Scan @ NIH/NCI
1" tumor remains at apex. No mets.
Persistent PSA .54 after 4 months
2ADT; IMGT 70.2 GY in progress

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/18/2018 10:54 AM (GMT -6)   
In my opening post, I reflected on the dramatic shift toward broad acceptance of AS which I had witnessed in the (nearly) decade since my immersion into the world of PC. But speaking only about AS understates the seismic changes which have taken place in other aspects of PC care. I found that the staff at "Renal & Urology News" had recently given a similar look-into-the-rear-view-mirror and published a list of the Top 5 Prostate Cancer Developments of the Last Decade.

81GyGuy
Veteran Member


Date Joined Oct 2012
Total Posts : 2231
   Posted 4/18/2018 11:39 AM (GMT -6)   
NKinney -

Yes, congratulations!
Age: 72
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): 0.1 or lower

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 4/18/2018 12:28 PM (GMT -6)   
We started this journey about the same time. Oct 08

Take care.
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 4/18/2018 1:16 PM (GMT -6)   
Cajun Jeff said...
We started this journey about the same time. Oct 08

Take care.



Thanks Cajun Jeff. 10-years is just on the other side of summer for you!

Have fun at your GFMPH party! I was just in BR...had 2 dozen raw at Jolie's after watching (from ashore) activity aboard the Kidd for "Greyhound." Also really enjoyed the state museum located by the capitol...got a good understanding for the regional flavors/differences across the state. Been to that museum?

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 760
   Posted 4/18/2018 2:33 PM (GMT -6)   
Sometimes I think about what would happen if my 9 year ago condition were to appear and be diagnosed today. What would the doctors recommend?

Let's keep in touch for another 9 or 10 years!
Diag at 53. PSA 2007 ~2; 2008 4.3
Biopsy 9/2008: 6 of 12 cores +; Gleason 4+3=7
Da Vinci@City of Hope 12/8/2008
Rad prstc
Cath out 7th day, in 8th day, out 14th day after neg cystogrm
Path: pT2c; lymph nodes neg; margins involv; 41g,
PSA 1/09-2/10 <0.01, 10/10 0.1, 2/11 0.08, 5- 0.11, 9- 0.10,1/12 0.16, 4- 0.13 8-0.17 12-0.23 9/13,14-0.20, 4/16-0.3,7/16-0.2, 8/16-9/17-0.3, 12/17-0.4, 3/18-0.5

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 5/9/2018 4:21 PM (GMT -6)   
In my final paragraph (top of page) after a 9-year look into the rear view mirror, I ended with a "Looking forward..." comment about the possible, proposed change by USPSTF to the Prostate Cancer Screening Recommendations.

Those proposed USPSTF changes were adopted yesterday, so in my 9-year PC experience I've seen changes from "I" grade (adopted before my time in 2008) to "D" grade (2012), and now from "D" to "C" (2018) for ages 55-69.

USPSTF now has stronger alignment in recommendations with the other two key professional physician organizations. In 2013, guidelines from the American Urological Association (AUA) and the American College of Physicians recommended a shared decision-making approach for men ages 55-69 and in men ages 50-69, respectively.

For greater clarity, note that the USPSTF is not recommending that anyone SHOULD or SHOULD NOT get tested for their risk of prostate cancer. What they are saying is that if you want to get tested between the ages of 55 and 69, that’s fine, but you should do so only after a discussion with your doctor, and that there are potentially significant upsides and downsides to testing which are experienced by men today.

MedPage TODAY article on USPSTF recommendation: /www.medpagetoday.com/urology/prostatecancer/72767

USPSTF recommendation (posted yesterday): /screeningforprostatecancer.org/read-the-materials/

Post Edited (NKinney) : 5/9/2018 3:31:59 PM (GMT-6)

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