Confused about negative margins

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 410
   Posted 3/31/2010 7:44 AM (GMT -6)   
I am getting a little scared and nervous about my future when I continue to read posts here about guys who had great pathology reports after surgery with "negative margins" or "organ confined", but yet after a few months or a few years ,  thier PSA's start to rise again.  I know that higher gleason scores like 8 or 9 are usually associated with those guys that have a rise in psa after surgery, but also I have seen guys here and on other forums with Gleason 6 and negative margins, and they also start seeing a rise in PSA after surgery.  Can any of us really be sure we won't see a rise in psa again?
 
I always thought that having negative margins meant that the surgeon got all the cancer and you are pretty much cured.   If you have negative margins which I assume means no cancer found outside the prostate, then what is causing a rise in PSA?  Is the pathology report really as accurate as we are let to believe, or when they slice of the prostate, do they just take random samples to look at and not every slice.
 
 
  I am also curious to know if anyone knows someone who had thier prostate removed 10, 15, or 20 years ago and is still cancer free today?
 
I am going on three years since my surgery and so far my psa is still <.04, but after reading posts here about guys with negative margins who start to see a rise in psa, I don't know what to think about the future.  
 
 
 
Age 56, Biopsy 6/2007 - PSA 4.5, 2 of 12 with  <5% cancer Gleason 6
Surgery 9/2007 Strong Memorial,  Rochester  NY with Dr. Jean Joseph (1300 plus surgeries)
 Path - Negative margins, cancer in 20% examined tissue, Gleason 6
 Post Op - No ED issues, full erections without drugs,  used 5-7 pads a day for 3 months. Now dry except for stress leaks now and then.
 All post op psa's <.04


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4450
   Posted 3/31/2010 7:57 AM (GMT -6)   
I understand what you're saying and nearing the 3 years mark, have some of the same worries. All we can do is hope and keep thinking that we are 'cancer free' and will continue to be so. As to who will have it return - it's all a crap shoot, there's just no way to predict. Persoanlly, I figure if I go 5 years without anything coming back, then I am cured. I admit after reading here for 3 years, I have a much greater awareness pf the possiblity each time I test, and am finding the test anxiety actually is increasing a little each time, rather than easing. smilewinkgrin
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 1774
   Posted 3/31/2010 8:27 AM (GMT -6)   
NY Sooner,
James is right and most of us get that PSA anxiety. In your looking at your stats and lack of ED problems you might have more of a chance of dying from a car wreck, bur probably dont have car wreck anxiety. Cancer is a disease that when someone tells you to think positive, a lot of us dismiss that and think,"well that is easy for you to say." But by all accounts your surgery went quite well and you have much to be thankful for.
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 Atlanta, Ga
Catheter out after 10 days
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, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/31/2010 8:50 AM (GMT -6)   
This comment for both NY-Sooner and James C...

I would encourage you NOT to think of the answer to your question as a "crap shoot." Shooting craps is a roll of the dice; it makes absolutely no difference who rolls the dice; the result is independent. The statistical probability of one die rolling a "6" is the same as rolling a "1".

The probability of bio-chemical recurrence (BCR) is highly dependent on many factors which are different from person-to-person. Many of those factors are not in your control (some are!), but you have knowledge of the factors. Without going into the details (which you probably already know), lets just acknowledge that your known factors indicate a LOW probability of BCR; someone with a different set of case factors will have a different probability of BCR.

I would further caution aganist using the participants in this forum as representative of the broader population of PC patients. In the PSA-era, the vast majority of patients are found early with either low risk or intermediate risk. [As a side-bar comment, the most current data shows a sharp increase of low risk or very low risk guys being identified, and treated, and often overtreated...thus leading to the uproar about "overtreatment" of guys not needing treatment.  I digress.]
 
Anyhow, the majority of those have been undergone treatment or are on AS and have moved on with their lives. Those guys tend to come-and-go here, and are a steady stream of newbies. Besides those newbies, most other guys participating in this forum have had more serious cases, or have had ongoing issues where they are looking for input from others who have also had persistent problems. You don't get a lot of the guys who were newbies, been treated 5- 10- or more years ago, and are still hanging out here...as I said, most have moved on.  (They are now probably visiting other HW sites with new, different ailments.)

Anyhow, the phrase "crap shoot" seems to be (mis-)used often here, but does not represent your (or anyone's) outlook for BCR...which was the root of your original question. Not meaning to be critical, James, but think about it.

Post Edited (Casey59) : 3/31/2010 8:13:05 AM (GMT-6)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2062
   Posted 3/31/2010 9:17 AM (GMT -6)   
Cancer is always going to be different in every patient,

I am almost certain that the people who come here and to other forums, are not representative of PSA guys in the general population as the one's without problems are not surfing the net looking for solutions.

but I am surprised that people's post-op pathology reports don't often seem mention much about the "nature" of the tumor. ie the difference between having say 30% tumor but having it all in one place or having 30% tumor but having it spread all over the place in little clumps as the latter would surely be an indication that it could be in a little clump completely outside the prostate, which by not being connected to a main lump would still give clean margins. (I'm guessing that that may be my problem as I had a bit on the left, a bit on the right, a bit by ther baldder neck and a bit in the seminal vesicles)

I agree that rolling dice is not the right analogy, as some aspects of PCa are not down to luck. perhaps playing golf with you eyes shut might be a better one.
Imagine not being able to tell which club you have selected but that someone can line you up as you take your stance. You will be very likely to hit the ball forward but only have a limited chance of getting the distance right, and it may take more than one shot, some of us will get their balls on the green, some of us will end up in the bunker etc. (I've just been told there is a water hazard between me and the green so I am hoping that this is an eight iron in my hand and that the water is only about 80 yards wide)

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 3/31/2010 10:27 AM (GMT -6)   
Well said Casy59, tho am sure it was said with good intentions, it does show the power of words,spoken or written.
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
8 week psa 0,o

Hypocrisy is vice's homage to Virtue


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 3/31/2010 1:28 PM (GMT -6)   
You might want to play with the Sloan-Kettering nomograms. They help estimate your chance of recurrence after surgery.
www.mskcc.org/applications/nomograms/Prostate/index.aspx

In my case, with positive margins, I found out by trying different numbers that I need two years of zeros after surgery before my odds of being cancer free start to rise.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3620
   Posted 3/31/2010 3:24 PM (GMT -6)   
NY,
As Casey said you are dealing with probabilities not luck. 22% of patients that have a negative margin will have a biochemical reoccurance. Cancer cells could have escaped or the margin could have been positive and was missed on the path.
But look at the good side of where you are. Even if a G6 has a reoccurrance, even as far as a matastasis, the odds are excellent that you will never die from it. The vast majority of G6s are non agressive, grow slowly even when outside the prostate and are easily controlled. A tiny speck of G6 cancer will take 20 years or more before you would even have any symptoms. A .5mm cancer (which is more than a speck) with a 3 year doubling time will be 8mm in 12 years; this is still a pretty small tumor
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 3/31/2010 4:16 PM (GMT -6)   
Now that's encouraging, Thanks for that, not that I;m a 6, but still.....
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
8 week psa 0,o

Hypocrisy is vice's homage to Virtue


ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 711
   Posted 3/31/2010 5:54 PM (GMT -6)   

I understand where you are coming from 150%.  I am the same.  A G6 with no adverse pathological features and I am still scared as crap everyday.  I noticed the same thing as you on this board.  People with great pathologies and then they have BCR.  Obviously, they weren’t organ confined.

 

So, here is what I know.

 

These studies of G6 people from Johns Hopkins.

 

This study was of 2,551 men who had surgery from 1983 to 2005.

 

Results:

With a median follow-up of 5.0 years (range 2–22), BR occurred in 13 patients (0.5%). The 5-, 10- and 15-year actuarial probabilities of BR were 0.3%, 0.9%, and 1.3%, respectively. Five patients (0.2%) developed LR, four of whom received salvage radiotherapy with subsequently undetectable PSA. The 5-, 10-, and 15-year actuarial probabilities of LR were 0.1%, 0.5%, and 0.5%, respectively. There were no Distant Mestastasis and no Prostate Cancer Specific Mortalities.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2603620/

 

Then Johns Hopkins comes out with this study.

 

Results:

The authors conclude that most prior reports of organ-confined, Gleason score 6 with progression have, in fact, been undergraded, understaged, or situations with ambiguous staging. They go on to say that, “Even for the rare true organ-confined, Gleason score 6 (no pattern 4) tumor with supposed biochemical progression, some may be false-positive progression based on low post-radical prostatectomy prostate-specific antigen levels and minute tumors that seem highly improbable to progress.”

 

http://prostatecancerinfolink.net/2009/09/22/surgical-outcomes-for-patients-with-organ-confined-gleason-6-prostate-cancer/

 

So, even if you have BCR it is not likely to do anything.  “Great, I feel cured.” NOT!

 

Then Sloan Kettering comes out with this study. Which showed a crappy 1.9% of people in the low risk people had metastatic progression.  Notice nobody in the Johns Hopkins studies did.    I don’t know what to think now.

 

http://prostatecancerinfolink.net/2010/03/25/metastasis-and-mortality-after-treatment-for-localized-prostate-cancer/

 

 

I also have another study, I can’t find the link it is at work, that showed after 22 years only 1 person out of 3768 G6 people died of PCa.   That’s a 99.97% survival rate after 22 years, although Johns Hopkins has 100% survival.

 

Anyway, so to further assess my situation I went to Yana-Now.net and looked at all of the G6 people on their web-site.  You have to read each of the bio’s because a lot of people are classified as G6 that actually weren’t after surgery.  Out of the 173 people I looked at only 5 had BCR.  The furthest one out was 19 years and he has done nothing, no salvage treatment and is PSA is 4. 

 

I also found one other story about a guy with G6 in his lung after RP. After they removed nodule his PSA was undetectable.

 

So, I don’t know what to think.  I am only 44 and I believe I have some for of aggressive G6 because I had it so young, although everyone from my local URO to Dr. Epstein at Johns Hopkins says that age has nothing to do with it.  I suppose the only solice I have is that since I went to Johns Hopkins, even if they missed things on peoples pathologies,  if they say you are a G6 in their books I know what happened to each and every patient after that.  Nothing......

 

Even with all this good data and for having cancer, we got off  very, very lucky, I still loose a lot of sleep over it.  Not to mention every time I have a health problem I go running to the Dr. to make sure it is not some kind of other cancer.

By the way they also told me that a PSA test once a year was "more then adaquate" for G6 people.  It was like I could do it less often then that if I wanted and the ultra-sensitive is not neccessary to them and only causes unnecessary anexity.  So I don't do the ulta-sensitive as long as it is <.1 I'm good.


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

Post Edited (ChrisR) : 3/31/2010 5:05:03 PM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3620
   Posted 3/31/2010 8:11 PM (GMT -6)   
Chris,
Everything you mentioned supports what I have read about G6 tumors; they are not very dangerous except for one exception. Klotz in his studies on AS identified a G6 varient that is very agressive and causes death within 5 years regardless of treatment. This varient becomes very apparent within 5 months, so if you are past 5 months since DX and your PSA hasn't skyrocketed then you can consider yourself pretty safe.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, July 29, 2014 11:46 AM (GMT -6)
There are a total of 2,182,363 posts in 242,701 threads.
View Active Threads


Who's Online
This forum has 153837 registered members. Please welcome our newest member, CEOutcomes.
458 Guest(s), 21 Registered Member(s) are currently online.  Details
Canada Mark, pictureofhealth, donsall, mysweetpanda, tickbite666, Dale B, pvct, Luvzminis, naturestealeaf, Jonny_Murray, ObtuselyOblique"OO", sevenyearsdown, MizPiggy31, keaz, Old Mike, quincy, F8, charliessjin, Kalman, Melaine, newtothis09


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer