Informal poll for status of PCa treatments

I had a PCa dx and:
2
PCa present, but no treatment and I am actively watching. - 3.3%
39
After primary PCa treatment, PSA went to non-detetable and still is non-detectable. - 63.9%
7
After primary PCa treatment, PSA went to essentially non-detectable, but since then has risen to where and I am actively watching it. - 11.5%
11
After primary PCa treatment, PSA went to essentially non-detectable, but since then has risen to where and I am having (or had) salvage treatment. - 18.0%
2
After primary PCa treatment, PSA was still undesireably detectable and I am having (or had) adjuvant treatment. - 3.3%

 
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pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/21/2010 12:24 AM (GMT -6)   
Hello All,
 
It just seems like there are a LOT of us going thru secondary salvage/adjuvant therapies. I do not remember there being many at all when I started posting in 2007.
 
So,  I thought I would do a simplistic unscientific and informal poll...
 
1.  PCa present, but no treatment and I am actively watching.
 
2.  After primary PCa treatment,  PSA went to non-detetable and still is non-detectable.
 
3.  After primary PCa treatment, PSA went to essentially non-detectable,  but since then has risen to where and I am actively watching it.
 
4.  After primary PCa treatment, PSA went to essentially non-detectable, but since then has risen to where and I am having (or had) salvage treatment.
 
5.  After primary PCa treatment, PSA was still undesireably detectable and I am having (or had) adjuvant treatment.
 
 
Anyway,  I thought the counts would be interesting...   And hopefully we can ALL make it back to the "zero" club!!!
 
pasayten
 

After 3-4 years of annual PSA 4-6, biopsy recommended
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
3/12/2010 Finished 32 sessions...  No side effects to date except a little
tiredness.  Slight changes in bowel movements the last week...   Would feel like I did not empty completely and get a little blood once in a while.  Also maybe aggrivated by a little constipation caused by cholesterol medicine simvastatin that I started in Novenber and when zi do not drink enough water. No change in frequency for bowel or unination though which was a blessing thru the whole process.
 


ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 831
   Posted 3/21/2010 9:41 AM (GMT -6)   
I agree it seems like that is all we are seeing here lately.  I have always liked the way they did it on Yananow.net, and feel we should try the same thing here.  Yananow database has some limitations though.  It would be interesting to see if the stats from everyone here matched what is published.  I know Johns Hopkins says that for Gleason 6 organ confined you have a 99.6% chance of cure.  That sure does not seem the case at this site.  But at Yananow it seems to work out close to that.  However, there is not a lot of long term followup there.   I am a programer and could write the database to track the data, but I don't do WEB developement so I would not know how to post the results.  I sure would like to start logging everyone here.  I have thought about doing this manually from everyones signatures, but that would take a lot of time.

 

Although, I did just read two articles about 2 guys in who where 18 and 19 years out from treatment and no problems.  My dad is 10 years out.


Dx 42
Gleason 6 (tertiary score 0)
OPEN RP 10/08  Johns Hopkins
pT2 Organ confined Gleason 6
PSA Undetectable as of 10/15/09
Next PSA 10/15/2010


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/21/2010 10:00 AM (GMT -6)   
Could be useful, I have hinted for some time here, that we (HW guys) sure seem to suddenly have a lot of surgical recurrance going on, espeically in the past 6 months or so. Hope your poll picks up a lot more sampling.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/21/2010 11:23 AM (GMT -6)   
I hope HW, and my home turf, cancerforums.net, become places where salvage and adjuvant guys report back over long periods of time. I have yet to hear the story of someone who had SRT 5 or more years ago and is still free from PSA progression. Statistically, they should be out there. I'm guessing that in the last 5 years, SRT has become much more widespread, since guys who were previously thought to have systemic disease (because of PSA becoming detectable quickly after surgery, or a rapid PSADT) are now more likely to get SRT, since Stephenson, Trock, and others showed that it could help a portion of even those who had an adverse prognostic factor like high Gleason or rapid doubling time. (In fact, Trock shows that it may be those with fast doubling times that stand to gain the most from SRT).

I'm over 3 years out now. Last year I think I saw a guy pop up on the Usenet group for prostate cancer support who had had SRT 4 years before and was still doing fine cool - PSA still undetectable. But that's it.

Besides the fact that SRT wasn't as popular 5 years ago, some of the silence has to do with age, I guess. I'm one of the younger ones. I guess if you had surgery at 69, and you had SRT at 75, then died of a heart attack at 83, I guess it's hard for you access the Internet from the Other Side. Then there are guys who don't think there's anything significant about the radiation - just assume it mopped up the leftovers, assume they're cured, and don't look back or talk about their experience online. There are people in my family who are 100% certain I've been cured (mostly for religious reasons) . They would be totally shocked shocked if my numbers went south. (I wouldn't be).

There are plenty of guys, I assume, who had their PSA rise after SRT and have been controlling their cancer long-term with ADT. And there are the ones who go from surgery to SRT to ADT to RIP. All added together, it means there haven't been a whole lot of guys saying "I had salvage radiation 10 years ago and it took care of my PCa!"

Lots and lots of prostate cancer survivors, including those who had SRT, are of my dad's generation and are simply much less likely to use the Internet.

I think the large number of guys here who are either getting salvage/adjuvant or who recently had it, represent the rising popularity of the treatments, along with the fact that discussion groups are weighted towards the newly diagnosed and those who have had some setbacks. In other words, those who have a successful primary treatment are not very likely to stick around and talk about it for years on end. Unlike me...

I hope this forum becomes a place of hope for salvage radiation patients, where we can report back long term successes. Of course, I hope I'm in that number, when the SRT survivors come marching in. I've read stories of salvage guys on HealingWell from a few years ago who stopped coming here. I hope that means all is well.

So, SRT brethren, my southern upbringing and the day of the week lead me to plead with each and every one of you...can I get a witness?

yeah

G.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 3/21/2010 11:50 AM (GMT -6)   
I wish ther wasa way to to separate out those of us with more than 1 year od experience and those with less. . the answers would be different. I'd sure like to know how many were undetectivbvle at one year and then had it rise.

(You just reminded me, it has been a while since I sent around my (admittedly unscientific) incontinence survey comparing open vs robotic surgery. The results of about 80 responses were interesting. Time for a new crop of guys to enter their data. We can see if things changed.)

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/21/2010 3:16 PM (GMT -6)   
Worried Guy,
 
Maybe bump up that continence poll of yours...
 
An interesting side effect of my SRT was that my "continence" actully IMPROVED...
 
I always had pretty good continence except that I started slacking on using kegals when needed...  if I was working going up/down a ladder or other similar stuff,  I would get occasional stress incontinence.  I got used to throwing on a small pad and not concentrating on control. 
 
For the SRT's,  they wanted me to have a full bladder when coming in for treatment...   That got me to drink a lot more water and to urinate less so I had the full bladder.  This prompted me to once again get "in touch" with my bladder to hold larger amounts...     I have had very little stress incontinence since.   An unexpected side effect of my SRT's...   :-)
 
pasayten

Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/21/2010 6:47 PM (GMT -6)   
bump
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 3/21/2010 7:41 PM (GMT -6)   
Put me down for the Primary didn't work, so at 74 days post surgery I went on to IG/IMRT.


First post rad PSA indicated a rise from a pre rad figure of .60 to a post rad 1.1

Going for another PSA tomorrow, 30 days since the last one.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.1---CARRRP --waiting for the next test.


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/22/2010 2:31 AM (GMT -6)   
Sonny,
 
Praying that your PSA results goes down brother...
 
pasayten

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 3/22/2010 6:04 AM (GMT -6)   
Pasayten
I'll bump up my old incontinence study.
Jeff

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/22/2010 3:58 PM (GMT -6)   

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/22/2010 4:07 PM (GMT -6)   
It seems as though this poll should somehow have a time element to it. Treatment within 1 year , 2 years , etc. Otherwise, guys who are 3 months, which we have many new guys on here, could skew the results undesirably. I realize this an unscientific poll, but it would be interesting to see the results more meaningful.

Thanks for posting it !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/22/2010 4:39 PM (GMT -6)   
Goodlife,
 
Yes,  it would be nice to include time and Gleason factors, etc...    Unfortunately,  the polls here only allow 6 questions and I thought it would be interesting for a snapshot of where folks are in their treatment(s) that are currently here.
 
There are probably other websites that have more detail survey info.
 
pasayten

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 3/22/2010 11:02 PM (GMT -6)   
Hi pasayten,

Nice poll... thanks!

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/07 <0.04; 12/07 <0.04; 03/08 <0.04;
06/08 <0.04; 12/08 <0.04; 06/09 =0.06; 09/09 <0.04;
Latest PSA 12/09 =0.05


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/23/2010 2:35 PM (GMT -6)   
Hi Barry,
 
Glad you like the poll.     I am hoping to get back in the zero club after the SRT.
 
It is good to see the 70% figure for folks with the still undectable PSA after primary treatment even though this is a highly informal survey and not scientific.
 
pasayten 
 
 

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/24/2010 2:36 PM (GMT -6)   
40 respondents so far and percentages staying fairly stable...

Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/24/2010 3:08 PM (GMT -6)   
I've been trying to count, by looking at signatures and other postings by HW members. I counted 25 guys who have had adjuvant or salvage radiation (mostly salvage) in the last two years, including those who just started in the last couple of months.

I would be really interested in hearing how Norskie and Pelahatchie are doing.

Norskie had been doing great and was going to have a check in November 2009 but as far as I can tell, he didn't come back to the forum.

Pelahatchie finished SRT in March 2008 and was doing fine in August 2009, but no word after that.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


TaurusBull
Regular Member


Date Joined Jan 2010
Total Posts : 91
   Posted 3/24/2010 6:56 PM (GMT -6)   
I just cast my vote. Thanks for the poll, pasayten!

Fred
Dx: in 6/2005 at age 49
PSA tests 3/2005: 3.8 ng/ml, 4/2005: 4.1 ng/ml, Stage: T1c
TRUS biopsy: 2 out of 10 cores positive, Gleason 6 (3+3), bone scan: neg.
daVinci Robotic Prostatectomy 8/2/2005
Post-surgical Path report: upgraded to Gleason 7 (3+4), pT2c, NX, MX.
neg. surgical margins, neg. seminal vesicles, neg. vasa deferentia
Perineural invasion: present
prostate capsule: tumor focally invaded into, but not beyond prostatic capsule.
Post-surgery PSA tests, all <0.1 ng/ml for about 4 yrs.
Then on 7/23/2009: 0.1, 10/16/2009: 0.2, retested 10/23/2009: 0.1, 1/22/2010: 0.2.
Switched to more sensitive test on 2/5/2010: 0.14 ng/ml.


eggbe
Regular Member


Date Joined Feb 2010
Total Posts : 33
   Posted 3/24/2010 7:00 PM (GMT -6)   
Being a recent HIFU patient my first PSa being .2 don't see that I can answer in a meaningful way. I'll wait for the more elaborate poll. My current status doesn't seem indicative of what you are trying to assess
age 59 psa 6.3 Nov 2009
gleason 7 (4+3) Dec 2009
HIFU 1-17-10
PSA 0.2 3-4-10 (before recommended 3 months wait)


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/25/2010 4:08 PM (GMT -6)   

MOM48
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/25/2010 8:52 PM (GMT -6)   
 Poll :  Add us to the Primary surgery completed, PSA remains non-detectable group.
Prostatitis x 2 years with treatment PSA 1.1
8/09 PSA jump to 3.1 biopsy returned with 2 cores positive Pca
12/09 Divinci Dr. Vipul Patel Celebration,FL
100 gm prostate, Gleason 3+4, neg. margins, one side nerves spared
2/09 PSA <.01 One pad a day just in case!
3/09 Leak free and pad free, ED


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/26/2010 11:56 AM (GMT -6)   
bump
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/26/2010 12:41 PM (GMT -6)   
I really like this survey--that's why I keep bumping it up. However, it just occurred to me- there's another possible category. That would be:

"After primary PCa treatment, PSA went to essentially non-detectable, but since then has risen to where I have gone to hormone therapy (ADT) without salvage treatment."


Only about 40-50% of men get salvage radiation after experiencing a rising PSA after surgery. This was discovered during the EORTC and SWOG randomized trials. Some of the remaining men were monitoring their PSA, but others had been referred for ADT. ( http://www.endotext.org/male/male10/ch01s11.html )

From another article:
Dr. Slawin estimates that 52% of men with rising PSA after surgery have localized disease, yet "'most patients who receive secondary treatment after radical prostatectomy are given hormonal therapy, which is not curative', he wrote. Fewer than half receive salvage radiation.

"'I think currently not enough men are being offered this therapy," Slawin said. "It seems that more men are good candidates.'"
http://caonline.amcancersoc.org/cgi/content/full/54/4/185

If there's a future version of this survey, maybe it can capture those men who went straight to ADT?
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 3/28/2010 11:30 PM (GMT -6)   

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 448
   Posted 4/1/2010 7:44 PM (GMT -6)   
Last bump for this survey
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