First Ultra sensitive PSA result.... Radiation or no?

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BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 8/19/2010 6:22 AM (GMT -6)   
Hi Folks. My 1st Post Op PSA was "0.1" - the lowest they record where I was at for this initial assessment. Just had my 3 month per my radiation oncologist, using ultra sensitive (as I had asked for and he agreed made sense) and got the result 2 minutes ago "looks like less than .1, can't get any lower than that" is how they described it.
 
So, that is a good feeling. My wife and family will be happy to get my next call.
 
Question. I have my meeting with my Rad Onc next week. He was pretty honest with me saying that he understood why I might want to hold off having RT, how the damage done can be a quality of life issue. Based on my stats, understanding there were pos margins, a 4+3 Gleason on pathology.. I think most would opt to go in an get the rest.
 
What say of of those here?
 
By The Way, I continue to be amazed at the strength and courage displayed by so many of you here. I promise that you are collectively in my thoughs and prayers. We are in the world together. It is bigger than any of us individually.
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 8/19/2010 6:27 AM (GMT -6)   
Darn! I let her get away with "Less than 1"... it was ultra sensitive.. II should have asked "less than 001?". Or, of it was ultra and she says "less than 1'... it must mean the same???
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 8/19/2010 6:57 AM (GMT -6)   
Hi Bob,
We're in the same boat, I had a thread about adjuvant rad a couple of weeks ago asking much the same thing. It's a TOUGH call. My Uro' wants some more healing to take place my rad' oncologist pretty much told me I was stupid for waiting as long as I have. Part of my decision was the predatory approach of the radiation guy, I got a huge used car salesman vibe off of him and he was evasive about side effects, I like honesty.

I (think) that I'm going to wait at least another 3 months 'till my next PSA Nov-1 to do radiation. I agree the data is all over the place but my logic is as follows.

1. I'm dry and getting pretty good results on ED so far and both I and my uro' both want as much healing as possible to take place in these areas as the rad' probably will set me back or stop healing where it is.

2. The data on adjuvant shows an X percent advantage over salvage, however this study was based on salvage at >.2 my uro wants to hit it as soon as it becomes detectable, (0.04 for this lab), this should give slightly better odds than starting at .2

3. Mindset, radiation scares the heck out of me. (not valid I know but a part of my decision never the less.)

Each of us has to make a decision that feels right for us, I really wish there was a cut and dried path to take but it's just not so. I have lost a lot of sleep over this decision and on some nights I still wonder if I'm doing the right thing but it "feels" right for me.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04
05-03-10 1 week without pads
06-28-10 ;-)

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 8/19/2010 8:02 AM (GMT -6)   
Bob, you are living my worst nightmare...My R-docs (two of them) told me "It looks like you will need radiation treatment anyway, why undergo surgery and all that entails?? Why not just BEGIN with radiation??"

My surgeon kind of agrees with them...he thinks his 40% chance (in my case) of a cure is worth taking that risk..But he also told me "you want to have any incontinence issues resolved before you begin radiation because that will stop the healing process and what you have at that point is what you will have forever..."

I think the ultra-sensitive PSA test can cause more trouble than it prevents...When the standard test hits .2 you know you need to do something...If you have a re-occurrence , it will be at .2 soon enough....

Many men (most?) have completed both surgery and radiation without suffering permanent incontinence..But in a few, (purgatory) the combined effects can be disastrous..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 8/19/2010 8:09 AM (GMT -6)   
Hi Bob, I can only give you my view based upon what I have read. With your gleason and stats the likelihood of recurrence is pretty high. You would meet the criteria that Dr Walsh lists in his book for adjuviate radiation therapy. Although many would wait until an actual recurrence. I would want to take care of it now if I could. I understand that most doctors would suggested waiting until you are healed from surgery and continent. Unusual 3-5 months. Best of luck. it is a tough decision. BB
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 8/19/2010 8:14 AM (GMT -6)   
Regaring your ultra sensitive PSA test. When you Dr said it was less the 1, I presume that she meant less than .01, but you need to find out. I get the test results sent directly to me so that there is no misunderstanding or miscommunication. It's just to impoortant for us.
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 8/19/2010 11:42 AM (GMT -6)   
My first post-op PSA was an ultra-sensitive test .07. My lab then discontinued the ultra sensitive and went back to the regular test. I had a <.10 followed by a .21 at the 6 month post-op point. I was still a little incontinent at that time (1 pad a day) but decided that since I hit the magic .2 mark, had positive margins, and a Gleason 4+3, it was time for the radiation. Finihed it 7/27/10. As of Monday I am now padless. I had a problem with urgency during and after the radiation that remains, but seems to be getting better. I had major fatigue problems during the treatment that has now subsided. I won't get my new PSA results until the 90 day post radiation date, but I feel optimistic. I guess it is a hard call for each of us to make. I personally think I made the right one. Of course when the next two PSA scores come in my attitude could change. Squid.
*Age 63, PSA July 2009 .66; Biopsy: 2 of 12 cores positive, Gleason 3 + 5
*open Surgery 10/22/09
*Post Surgery Biopsy Gleason 4 + 3; 2 positive margins
*03/11/10 - Bladder neck surgery for stricture
*PSA - 30 day/.07, 90 day/.15, 180 day/.21
*07/27/10 - IGRT done - 39 zaps, 70 gys

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/19/2010 5:53 PM (GMT -6)   
Bob,
Go with what BB says ........ make sure you get a copy of that result in your hot little hand. The latest ultrasensitive (Gen 3) has a lower detection limit of 0.003. If a tech reports <0.001 they don't know the nitti-gritti of the test. But at such low levels the result has a fair degree of error, meaning if they tested the same sample several times there could be a 20% variation either way. For this reason much of the time the report will simply say <0.01. If the test equipment is an earlier version (Gen 2) the lower limit of detection is 0.03. If PSA is not detected using Gen 2 then the result is <0.03, again with the same 20% possible error, so it is often reported as <0.1
Bill
Biopsy

4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007

Post-op

Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct '07 <0.1 undetectable
PSA Jan '08 <0.1 undetectable
PSA April '08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August '08 <0.001 undetectable (disregarded due to lab "misreporting"-----it is not possible for any lab to get a reading of less than .003)

Post-op pathology rechecked by new lab:

Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September '08 <0.01 (new lab)
PSA February 09 <0.01
PSA May '10 <0.01

www.yananow.net/Mentors/BillM2.htm

Never underestimate old people ............ you don't get to be old by being stupid.

Post Edited (BillyBeans) : 8/19/2010 7:33:42 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/19/2010 6:57 PM (GMT -6)   
fairwind,

in fairness to some of our new brothers and friends here, I would like to think of my journey and some of the horrors attached to it, as being the "exception", not the "rule". Sometimes I wish I'd never kept my journey so public, as I do not wish to scare off anyone from getting and taking the treatments they need in fighting PC. But that is weighed out in a reality check, it's important to men here to know, that bad things can happen from treatment, that not everything goes by the book. PC doesn't play by rules or fairness or consistency. That's the first thing a guy new to this world needs to get under his belt. When you read about stats, and its says that as a result of surgery, perhaps 2-4% of men will have trouble with chronic strictures, that number seems small and meanginless unless, like me, you end up in that group, a guy that has now been on 21 catheters and have suffered literally thousands of painful bladder spasms. That's why I think its important in our fight against the beast, that all our stories be told: the good news, the bad news, and everything in between. I do not like to be caught off guard, I don't like surprises, this is something that I have drummed into every member of my current medical team. I can take and endure even the worse kinds of reality, as long as I know about it.
The rest of, comes down to determination, stamina, courage perhaps, and a strong will to want to keep fighting at all costs. even with what i have endured over almost a two year span, the point is , I am still fighting and kicking and researching and scheming against the PC monster. He may ultimately win and take me away, but it won't be of lack of fight on my end.


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 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/19/2010 7:32 PM (GMT -6)   
Bob,

You are in my world. I do not recommend what I am doing, I am only reporting my journey.

I had a biopsy with Gleason 9. Went to local uro, who told me radiation was the way to go. Went to Cleveland Clinic, met with department co-chair, who felt confident he could effectively treat my cancer with DaVinci. He convinced me, I trusted him, and had surgery. He felt very confident afterwards that he had been successful. Path report looked pretty good. Negative margins, no seminal vessicle involvement, perineural invasion.

Went to University of Michigan cancer center with results. Had a well known oncologist look at everything. She advised adjuvant radiation. Looked like about a 10% better chance of a cure over salvage radiation, but needed to factor in radiation tumors which they said happened 1 1/2 % of the time.

Went back to Cleveland for 6 week check-up, undecteble PSA. I told surgeon about UofM discussion, he looked at me quizically, and said, that is old thinking. The current thinking at Cleveland was to wait until rise in PSA. Besides he said, I believe we got it all.

I was concerned about incontinence which took me 8 months to overcome. ED still hasen't left, and I wasn't sure I wanted to pretty much eliminate the possibility of sex.

So, I decided to wait. So far, it has been a good gamble. At 15 months I am less than .01. I just decided that the risk of radiation, and the relatively small advantage in curative results with adjuvant over salvage was worth waiting. Only time will tell.

Best of luck to you in making your decisions. The rad guys can be pretty pushy, and try to make you fell stupid for not doing, and for all I know they may be right, but I felt that QOL was also an important thing.
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
1 year psa (364 days) .01
15 month PSA <.01

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 8/19/2010 9:06 PM (GMT -6)   
VERY much thanks to all for sharing your perspectives on this. If I wasn't sure that the disease had escaped the prostate that I had removed, this would be an easy decision - "easier" I should say- there's not alot of "easy" anything about any of this for any of us. But pathology shows that it has.. so it seems to me that there is basically a ticking timebomb still ticking inside of me. And i'll always know it.

On the otherhand... I haven't even fully recovered from the surgery... or the removal of my prostate - two distinctly different assaults on my body, of course. I do think that the more time I can buy myself before having RT, if at all, the more time I have to heal.. so that I might have a better long term quality of life should I need RT down the road.

Another factor that pressures me into waiting until the psa rises is that I see the potential for new medications and cures in the not too distant future. It would REALLY be cruel to radiate my insides so that 5 years from now that poison is continuing to do damage to my body, when science had found new treatments that offer a superior result.

I don't know folks. Everyone is right - there is no easy answer. I stopped smoking in Jan, months before I had a clue about having PCa. I now enjoy walking 3 miles a day, having started when my doctors said to get that excersize in order to recouperate sooner from the surgery. The result is I actually feel better than I have in years. Go Figure.

So while I have tough decisions to make about my own care, I pray more so for others like Purg - and others, who's fight is hitting home TODAY. God bless you guys! I do pray for you, often!
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 8/19/2010 9:15 PM (GMT -6)   
Bob,

I sort of violated all the rules in the sense that I did not wait for a PSA rise. I went from DaVinci straight to IGRT as soon as there was "room at the inn".
Justifications:
- Biopsy 9 of 12 positive at G 4+4, both lobes
- Post op G 4+5, both lobes, multiple EPE & positive margins on multiple sides after they took extra-wide margins, the nerves, and extra time in surgery to prevent that.
- at 57, mets are not something I want to face; I've had a friend who went through that
- my uro's experience and advice
- the latest study (that Walsh participated in, posted on this board) which proposes that waiting for a PSA rise changes the outcome dramatically to the worse.

There are other reasons (age, job, insurance) that in a perfect world should not count, but in this one they do, and big time.

So I've done both, and hope that the stories about incontinence never getting better after radiation are old wive's tales, but I know better, so it's a pad or two a day from here on out, I guess.

We each make a decision, and hope for the best.

Make yours with calm and deliberation.
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