Some thoughts and possible questions on my own case

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Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 5/8/2011 4:47 PM (GMT -6)   
Been doing a lot of deep thinking on my own situation.  Not so much second guessing, more like analyzing what has happened.
 
In 2006, at age 54, my PSA was at 3.5.  In each of the previous 4 PSA tests starting at age 50, my PSA average an increase of .5 per year, until 2007.   In 2007, it crossed the 4.0 mark, and then my GP passed me to my urologist.  That was the standard that has been used for years.  The 1st biopsy was 12 core, showed no cancer, but lots of PIN, and indicated PNI.  A year later, 2008, it had tripled to 12.3, and the 2nd biopsy, also 12 core, showed no cancer, but lots of HGPIN, and PNI.  6-8 weeks later, biopsy 3 was targeted to "suspicious shadows" from the 2nd biopsy, and came up positive with 7/7 cores, Gleason 7, cores were 40-90% cancer, and PNI present again.  Just prior to surgery, the PSA rose to 16.x, an increase of 33% or more in a question of weeks.  It's important to remember, there was no evidence ever of any kind of prostate problem or infection, and all DRE's were negative
 
I wonder if I had been biopsied in 2006, could it have found cancer.  It's a reasonable assumption, that the cancer didn't appear from nowhere prior to my dx.  It had to be in there and growing, or was it agressive enough strand to start up and take off running?
 
Post surgery, my lowest PSA was .05, and my uro was deeply concerned.  It doubled in 3 months.
 
My highest post surgery PSA reading was .16, when the decision to go for SRT.  By some peoples standard, that was "jumping the gun" on SRT.  I was encouraged strongly to do so, based on my pre- and post-surgery PSA velocity issues.
 
Now I had 72 gys of radiation, which is on the high side for SRT, higher than a lot of guys here have had, though not the highest.  It was supposedly being targeted to the prostate bed only, not the entire pelvic region.
 
A question comes to mind, since my bladder was not being protected by being filled, which also aids in protecting the bladder neck, rectum, anus, and other surrounding areas, I wonder if much of the targeted doseage was wasted or mis-directed in the process of destroying my bladder and bladder neck?
 
Since I had a known deep/narrow prostate bed, and since I was given IMRT, you would think it would have been a narrower and easier target to pinpoint with the radiation machine.  72 gys is often the dose given for men having RT as a primary treatment.
 
So was some of this radiation wasted, in a manner of speaking, or was the remaining cancer never in the prostate bed to begin with?
 
Contrary to Dr. Walsh's opinion in his book about PNI, he doesn't put much stock in it.  3 RO's, 1 MO, my uro/surgeon and my GP all felt strongly, and independently, that PNI can be a dangerous situation, and increases the risk factors with any primary or secondary treatment.
 
The million dollar question to me, is where is the cancer right now?  My orignal pathology looked fairly decent, and I even was downgraded from a 4+3 to a 3+4 Gleason, with one minute positive margin.  According to one of the RO's, with PNI, you have multiple nerves in the prostate, that to tiny cancer cells, act like giant escape canals, allowing cancer to long escape the prostate and relocate who know where in the body.
 
Something is going on for sure, to have my post SRT-PSA go from .06 to 1.24 in 6 months, and then to 3.8 in 7 weeks time.  I am predicting that my May 31st reading will be in the 6.x to 7.x range, hoping to be wrong of course.
 
Either I am becoming the poster child for the adovocates of the Inherent Danger of PSA Velocity prior to DX and/or the danger or PNI, or both.  Or something else is entirely going on here.  Its open to discussion.

David in SC

Post Edited (Purgatory) : 5/8/2011 4:50:57 PM (GMT-6)


Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 5/8/2011 4:58 PM (GMT -6)   
You have to do what you decide is best for you, David.
I would have started HT a long time ago. But that's coming from a guy who did his secondary treatments in an adjuvant protocol. Where is the cancer? Could be that bladder that never responded well. But who knows. Where ever it is the next steps are typical. You can look into clinical trials as well.

I know you are struggling with this decision. I hope the best for you as you get to that point you have to make it.

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/8/2011 5:28 PM (GMT -6)   
thanks tony and ohio,

i definitely don't feel its over, not like i am picking out a casket and making hospice plans, lol. but i feel that something very uniquely is getting out of hand, and its picking up speed. its possible, won't know till it happens, but my PSA could be above my already high dx PSA by the end of this year, if the doubling speed continues. that's frightening considering i already have surgery and a crap load of radiation.

david
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 margin
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, 4/11 3.81
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

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 5/8/2011 6:18 PM (GMT -6)   
Hi David, you raise some interesting questions. I still struggle to understand prostate cancer in respect that clear margins does not necessarily indicate that the cancer was contained but could still had spread. I'm dumbfounded by that, but I also believe that many cancers still remain a mystery.

My "guestimate" is that your cancer maybe had escaped before surgery. Maybe the biopsy wasn't targeted as precise as could have been? It reminds me of the drug finasteride where there is evidence there could be a prevention factor for prostate cancer when taken. But the study results indicate that some tumors appeared more aggressive and also more numerous. The makers claim that because the drugs shrink the prostate gland, the biopsy procedure is more likely to strike cancer cells. So perhaps there is a connection with the original biopsy? It just didn't hit the tumor(s)?

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 5/8/2011 6:28 PM (GMT -6)   
David,
Your psa velocity and doubling time is certaintly suspicious for a very agressive cancer. Your surgery and SRT failures are indicative of it being systemic at the time of your surgery. Did you ever get a PAP test or a PCA 3 test? Do you know your ploidy?
As you said it's too late for 2nd guessing. You can still get your slides reviewed by Bronkoff to see the genetics or identify a varient. You could also go to Sandlake imaging in Fla to see if there are any lymphnodes that are infected. You may be able to have any infected lymphnodes surgically removed if they are identified.
My educated guess was that your biopsy missed the cancer and since it was agressive it started to grow very fast, doubling in size every three months.
Personnally I would have seen someone like Dr Myers at the first indication of failure. I still feel that someone with Myers' experience with advanced PC may still be able to help you. It's your decision and I wish you the best.
I've become a firm believer in finding out everything you can about the biology of what you are dealing with before deciding on any treatments. The biology dictates the treatment.
JT
66 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.

maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 784
   Posted 5/8/2011 6:28 PM (GMT -6)   
Hi there David, in a way I know how you feel, where is the cancer? my oncologist says they don't know, because it is microscopic, In my case, my PSA has only gone from 0.5 to 0.7 in nearly 4 years, BUT it is disconcerting to know that the treatments I have had have failed, and have also been told that they can't find or see the tumour until it reaches 10mm.

So like you I wonder where it is, this plays on my mind at times, my friend.

Regards Mal.
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept. Totally dry since catheter removed
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA from 30th April 08, until now range- 0.5 to 0.6, I am now 70

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/8/2011 6:42 PM (GMT -6)   
johnt - to the 3 questions in your first paragraph, no, no, and no. i even dug up all 3 biopsy reports, and nothing else new has been found in them, that i haven't reported before.

i have been suspicous about the final staging at t2c, its acting more like an agressive t3x staging, not even convinced any more that the downgrading of the final gleason was accurate, its acting more like a "4" component than a "3"

mal, my friend, i more than understand your situation, I don't like your .7, but I hate my current and fast moving 3.81 even more
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 margin
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, 4/11 3.81
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

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 5/8/2011 8:44 PM (GMT -6)   
David:
 
Excellent questions, but probably not answerable by us.
 
You probably should be making a long list of questions to ask a true expert.
 
(I gather you will have an appointment soon).
 
Mel 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/8/2011 10:00 PM (GMT -6)   
Mel,

Not looking for professional opinions here, just personal takes. Got a long list of questions preparing for the new oncologist. Tommorow will be getting an update on the appointment with the Gibbs Cancer Center.

From what I have learned here on the HT side in the past 2-3 months has allowed me a better chance of asking the right questions I feel. This phase of my journey is not one that I was remotely prepared to deal with, mentally or emotionally, as I have been too busy the past 2 1/2 years fighting all the other terrible things.

I do have my wife's and entire adult family firmly behind me, whether I choose to the HT route or not. I have talked to each of my 3 kids on an individual basis. We are a very close and open family, and discuss things to the ninth degree.

Hopefully by the end of June, I will have a much better picture of where I really stand, and what my true options are, then will come the hard part, the decision to execute or not, any treatment plan.

If I hadn't got burned so bad with my primary and secondary treatments, I probably wouldn't be so gun shy about stepping forward, I don't intend to get burned a 3rd time.

As for you, I sincerely hope and pray the SRT works its magic on you. We have quite a few here at HW ,that have done well for themselves after undergoing SRT, and want to see you in that group. For me, of course, that hope has long passed me by.

David
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 margin
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, 4/11 3.81
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

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 5/9/2011 12:56 PM (GMT -6)   
Good luck, David. I hope you get some useful answers from our HW group. They are very thoughtful questions and not easy to answer.
 
Mel

pattersson
Regular Member


Date Joined Apr 2010
Total Posts : 97
   Posted 5/9/2011 1:55 PM (GMT -6)   
David, you have been really unlucky twice, first with having the cancer run out of the barn, and secondly with the radiation. And you have done everything by the book! But to me it is bad luck, not a trend. I do not agree with the thinking that you are doomed to bad outcomes for the rest of the journey. That would sound like depression to me, understandable but to be avoided.

No opinions on treatments, I'll think about such things only when I have to.
Radical prostactemy 10/2006 @42, PSA 3.9, Gleason 3+4
PSA <0.2 2006-2009

PSA 0.14 01/2010
0.07 05/2010
0.06 10/2010

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 5/10/2011 12:56 AM (GMT -6)   

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 5/10/2011 7:15 AM (GMT -6)   
David;
I come from a family filled with cancer(Lung & brain) and just over all bad luck. Just a bunch of schlep rocks so to speak. The last 3 years have been miserable for me, but I can't let it get me down, and you need to do the same. Things always seem to turn around and I know they will for you. Sooner or later every one catches a break and now it's your turn.
Stay Strong!!!!
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
2nd PSA-05/09/11-0.08

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/10/2011 10:32 AM (GMT -6)   
Thank you, daslink, an, OS, and others.
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 margin
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, 4/11 3.81
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
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