Critical Importance of staging your PC

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 2/28/2009 4:49 PM (GMT -6)   
It breaks my heart to see a lot of postings on this forum of people choosing treatment options without fully understanding the nature of their individual PC.
Dr Strum laid out the best process for achieving a favorable outcome in the simplest of terms:
1. Understand the biology of your cancer.
2. Choose the treatment that gives the best possible outcome for your cancer's biology.
3. Choose the best doctor specializing in that treatment.
 
 PC is very individual in nature and understanding your particular PC is the most important step in this process. A biopsy and a path report only tell a small part of the story and most individuals and doctors use only this to determine a treatment.
If the biopsy shows a gleason 6 and less than 5% of the core it is critical to know if this is a tumor or just insignificant cancer clusters that will never hurt you. Get a 2nd path opinion and see an oncologist who can determine this. If it is a small slow growing tumor you can put off the major side affects of treatments for years with very little risk.
In high and intermediate risk gleason 7-10 and high PSA it is important to know where the tumor is and if it has penetrated the capsul. If the tumor has penetrated the capsul or is next to the urethea a good surgical margin is highly unlikely. Tests like color doppler and MRIS can identify the tumor location and extra capsular extension. Newer imaging such as DES and difussion MRI can also identify extra capsular extension.
Other markers such a PAP and PCA3 can indicate if the PC has spread beyond the surgical margin as well as some other blood tests. Combidex MRI can identify lymph node involvement so a lymph node dissection can be avoided or lymph nodes can be individually targeted.
It is also informative to know the agressiveness of your particular cancer. Nomograms and Partin tables will give the probabilities of cures using different options so a beter decision can be made using risk vs outcome.
3D mapping using multiple biopsy samples can determine if the PC is multi focal or just in one spot.
Only after gathering all this information can one truely make an informed decision of what treatment option is best.
Waiting a few months to gather this information will not hurt you as much as making a decision based on insufficient information. You can slow down the PC growth during this waiting period by diet and supplements as well as by taking some ADT meds. Taking meds is not recommended as they will invalidate many of the tests. After steadily rising PSA for 10 years I have reduced my PSA every month for the last 4 months through diet alone. It has gone from 40 to 29 without any medication so waiting is not a major issue.
Getting 2nd opinions from surgeons, radiologists and  prostate onclogists is a must in this process. All three will have different opinions. Don't get referrals from the doctors you see for 2nd opinions or get a 2nd opinion from a doctor in the same group as there are built in conflicts of interest in the referral process. Get 2nd opinions from doctors that have no connection to the doctors you have already seen.
JohnT
 

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/28/2009 6:50 PM (GMT -6)   
Hey John I wish I could have met you with this information back in 2002, I was searching hard to find anything close to this kind of info and/or answers from the docs, whom I got 8 opinions face to face with and probably another 4 via correspondence, finally found some decent answers, but it was difficult.

Your information in totality is "off the hook" and right on about PCa, nice to see you pioneered some information directly on the combidex scanning method showing it is superior to other scans, as it is touted to be, maybe not perfect of course.
John you keep this up (LOL) and we may be calling you for an appointment or testings, I saw uro-docs whom did not practice what you have mentioned and explained, and maybe they just didn't know it....and that is the scary part of it all.

Dx-2002  total urinary blockage/emergency room, bPsa=46.6 skull , 12/12 biopsies all 80-95% vol=cancer+, Gleasons found 7,8,9's (two sets of the same-both sides), ct and bone scan clear turn   (no warranty given).  Protocol: adt3(early on)+rad-neutron/photon+adt3-switched to DES-off drugs 2 yrs.-resumed DES Nov. 2008, psa now .36


 

Post Edited (zufus) : 2/28/2009 4:54:51 PM (GMT-7)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 2/28/2009 9:22 PM (GMT -6)   
Hey John,

You are a braver man than me with your PSA in the 20s and still up in the air about which treatment to use. My approach was much simpler, at least I could understand it. Got cancer? Get rid of it!!!

Good luck and stick around because you have lots of valuable information...

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06. Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + .04 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/08 0.00.
PSA on 1/28/09 - 0.02
Lung cancer dxed on 5/16/08. Surgery on 6/25/08 T1N1M0 - Stage IIA Finished 4 cycles of chemo on 11/7/08.
CT scans on 12/2/08 & 2/25/09 - in remission!!!
Next scan in May 09.
Biker90's Journey
Jim's Space
"Patience is essential, attitude is everything."


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/28/2009 10:13 PM (GMT -6)   
John,
I always look for your posts because I find them very informative. Your research and journey is very educational to us all. Keep up the good work and thanks. By the way, what type of diet do you follow and does it help after surgery.
Age: 67
Retired in 2001 and living in Austin TX.
PSA 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/1/2009 12:30 AM (GMT -6)   
Ed,
Basically I eliminated all red meat and dairy and keep sugars to a minium. I try to keep all animal protien to between 5% and 10% of total calories (Fish and some chicken). I take pomagranite, lycopene and green tea capsules and vitamin D and C.
It's helped my total heart related numbers, triglicides, HDL, LDL and glucose have all improved. blood presure is 110 over 60. Lost about 8 lbs in 8 weeks and feel a lot better. I should have done this years ago even without PC.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I had BPH and not PC but to keep getting biopsies every year just in case.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found was indolant and statistically insignificant, but PSA history was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland.

Combidex MRI in 2-09 showed all lymph node clear.

Changed diet and takiing supplements while I wait, PSA dropped from 40 to 29 through diet alone. The location of the tumor next to the urethea plus the high psa make surgery an unlikely option.

Currently on Casodex and Proscar. Consultation with the radiologist suggested adding Lupron for 3 months before IMRT. May use a combination of seeds and IMRT. Radiologist and Oncologist will get together and come up with a joint recommendation next week.

JohnT


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/1/2009 1:18 AM (GMT -6)   
Hi John,
I have been watching your path because I do find it interesting. A Gleason 4+3=7 with a PSA of 40 is definitely high risk cancer and pobably spreading. The advice you are giving is good, but I am confused a bit. While I did not go to Holland and receive a combidex MRI, I did choose the best options at my disposal using the the best doctors at my disposal. And surgically we were pretty darn close to the Partin tables. If I had the Combidex scan performed, unless I had Lymph node involvement proven I still would have chose surgery. Like Jim says, I was in get it out mode. LOL

One, however, has to remember that this is not a standard rout for many A> because they lack the financial ability to do what you did and B> it is rarely necessary to do so. Is it necessary for every one to follow that path ~ of course not. For example 85% of prostate cancers are either stopped or indolent without all these steps, and it is done so without this type of imaging. Certainly I understand you taking the path you did. After so many biopsies I might be inclined to go to other resources in other countries as well.

Out of curiosity, since you do not have EPE, SVI, and the imaging is favorable for no sign of angiolymphatic invasion, why do the ADT3? And is it possible the Casodex and Proscar have reduced your PSA and not diet? (you don't say when you started that protocol). I ask these questions seriously for my own education. But you took extra steps to verify that Dx and it pretty much came back in line with your PSA. I guess what I am saying is your original PSA of 40 and biopsy of 6 would have told almost all doctors here in the states that ADT (with or without the Proscar) and RT would be necessary without the need of the trip to Holland.

In any case, great work. And now on to healing. I wish you the very best. And this is a crazy disease!

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 2/28/2009 11:21:38 PM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/1/2009 2:52 PM (GMT -6)   
Tony,
All your questions are valid. I had a transition zone tumor which creates high PSA while still being contained. If I would have had a peripheral zone tumor with a high PSA I would have done things a lot differently and much more quickly. Because of the scans I knew it hadn't penetrated the capsule so I needed to know if the high PSA was being generated by the tumor or was in the lymphatic system, hence the Combidex MRI. The nomograms indicated a 30% chance of lymph node involvement. Combidex convinced me that my tumor is acting like a typical transition zone tumor and is contained. Without Combidex I would have had my Lymph node radiated because of the high risk.

I had my PSA checked monthly and if it had continued to rise instead of fall I would also have acted more quickly. I felt that the PC had been in me for at least 10 years and probably 15 so a couple of more months was a small risk.

The problem was that my original uro oncologist did not take into account my high PSA in his recommendation. He recommended surgery without ADT and this was a mistake on his part as the transition zone tumor was much larger than he thought and would have resulted in a failure. The color doppler and Combidex verified this.

I just started Casodex and proscar 2 weeks ago and haven't had a PSA reading yet while using them, so the PSA change was strictly due to diet.

I fully expected to get a Lupron shot last week when I saw my oncologist, but he said to see a radiologist 1st and see what he recommended. My prostate is 60mm right on the border line for radiation without ADT3. The radiologist wants me to get a Lupron shot just to be on the safe side and my onco and he will get together next week and come up with a final recommendation.

The tumor is at the apex right next to the ureatha so a surgeon would have to be exceptional to get all the cancer without damaging the ureatha resulting in permanent incontenance. This is just too risky when radiation can get it without a problem. This alone was a justification for the scans as they revealed important information that the biopsy couldn't. How many other surgeries have failed because the tumor was in an unfavorable location or had already penetrated the capsule?

I realize that my case is unusual and because of all the previous misdiagnosis from some very good doctors I wanted to make sure that I got it right and all the data corolated and could be explained before I took the next step. I'm glad I had both the time and resources to follow this path as it increases my odds of a favorable outcome. I still feel that many people act too quickly without adequate information.
My main concern is the high reoccurance rate, especialy from surgery, and I feel that this is due to the lack of taking all the steps necessary to properly stage the PC using all of the tools available. Based on the initial information I had and my lack of knowledge I was in the process of interviewing surgeons. I have no doubt that this would have resulted in a reoccurance. It was just dumb luck that my wife had a follow up with her oncologist and he insisted that I get a 2nd opinion from Dr Sholtz.

The value of the Combidex is only for those that the nomograms show a high risk of lymphatic invasion. If confirmed, individual nodes can be targeted rather than radiate the entire lymphatic system. My oncologist was surprized and said I was his 1st patient who came back with a clear Combidex scan. He has sent about 30 patients to Holland for the scan.

I realize the emotional toll of PC and the need for a lot of people to want the cancer out of them as quickly as possible. As you may already noticed I don't make emotional decisions and know that PC contained in the prostate never killed anyone. It's the PC outside the prostate that is the problem. I have no problem living with PC as long as I know it's contained and not growing.
Hope this explains why I took this course.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I had BPH and not PC but to keep getting biopsies every year just in case.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found was indolant and statistically insignificant, but PSA history was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland.

Combidex MRI in 2-09 showed all lymph node clear.

Changed diet and takiing supplements while I wait, PSA dropped from 40 to 29 through diet alone. The location of the tumor next to the urethea plus the high psa make surgery an unlikely option.

Currently on Casodex and Proscar. Consultation with the radiologist suggested adding Lupron for 3 months before IMRT. May use a combination of seeds and IMRT. Radiologist and Oncologist will get together and come up with a joint recommendation next week.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/1/2009 3:11 PM (GMT -6)   
I have been around PCa cancer forums for years (since 2002) and seen alot of patients scenarios and read others on P2P (patient to patient) and other places(prostate-help forum, webmd forum and others). I cannot say that I have seen anyone (period) as diligent as John T. in working at and finding the best assessment and information he can get his hands on and mind wrapped around with his own PCa case and variables.
Is this the same path that everyone can take or do? Probably not feasible for everyone, travel, costs, variables and multiple opinions, insurance coverages, time frames or waiting periods, and maybe even less zest for the investigative wanting to analyze or study it all. Do we others, benefit by knowing this.....absolutely....can someone take just part of these variables and be perhaps better off in their journey or treatment or decisions.....absolutely.
There will be another patient coming along with PCa as a new-inductee whom can use this kind of information to build his PCa case and knowledge base of what are the various tests, analysis etc. It could make a world of difference to there choice(s) and outcome(s), timing schedule as to when or how soon to act, etc.
 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 3/1/2009 3:59 PM (GMT -6)   
John,

A lot of what you say is true. Unfortunately, a lot of the resources you mention are not available in a lot of locations and even if they were, the urologist you see may not know about them or, if they know about them, how to use them.

The newly diagnosed patient stopped listening almost as soon as the doctor said cancer so they haven't a clue of what to ask, much less tell the physician what kind of tests to run before he makes a treatment decision.

In my opinion the prostate biopsy should be performed by a physician or technician trained to do biopsies with the latest equipment, not your local urologist. Where those samples are taken makes a world of difference. You could take 12 samples with no cancer and 12 samples with grade 7 cancer from the same prostate. That's why there is frequently a difference in the post-surgical biopsy.

The technology is improving every year and maybe, some day, there will be no need to stick that needle there at all. Until then we will try to help the newbies and agonize over those who sought help only on recurrence.

Good post, John

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/1/2009 9:08 PM (GMT -6)   
stx,
You have a great point. It seems there is a lot of talk about finding the right doctor to perform diagnosis and staging, and no talk about centers that could exist for biopsies. It would seem the right suggestion. We have them for colonoscopies and gastrointestinal diagnosis, but not for prostate cancer screening and detection. I will be on a panel in May with some great doctors and I will run it by them and get their thoughts on it, I'm kinda curious what they may say. In my thought if it were done this way then resources can be concentrated with the best technologies available as opposed to distributing needle biopsy kits to urologists that end up at various pathology clinics. Right now you could go to Johns Hopkins and get an Epstein to look at them, but is that truly the best avenue? Today maybe, but it would be nice if their were specialty diagnostic centers forcussed on prostate biopsies...I will say that as long as focal diagnostic equipment is programmable ~ I would trust it only as far as where to stick the needles. And I specialze in huge technology projects...

Just a thought.

great thread...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/2/2009 12:23 PM (GMT -6)   

Dave,

Excellent point. I know of only two doctors who specialize in biopsies, Dr Fred Lee in Mi and Dr Bahn in Ventura Ca. I know that Dr Bahn has done over 14,000 biopsies and Dr Lee has probablly done even more. There needs to be more effort put into this area as it is critical.

When talking to Dr Barantsz he mentioned that biopsies are now controlled by urologists and they are very jealous in giving this up and he has to be very careful in how he presents new imaging technologies so urologists don't get defensive.

Tony, you may want to bring this up in your circles as the last thing we patients need is a turf war between different practices as it does not help us patients.

JohnT


I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I had BPH and not PC but to keep getting biopsies every year just in case.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found was indolant and statistically insignificant, but PSA history was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland.

Combidex MRI in 2-09 showed all lymph node clear.

Changed diet and takiing supplements while I wait, PSA dropped from 40 to 29 through diet alone. The location of the tumor next to the urethea plus the high psa make surgery an unlikely option.

Currently on Casodex and Proscar. Consultation with the radiologist suggested adding Lupron for 3 months before IMRT. May use a combination of seeds and IMRT. Radiologist and Oncologist will get together and come up with a joint recommendation next week.

JohnT


LJF
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 3/2/2009 11:10 PM (GMT -6)   
While your research is remarkable, I would like to know what your background is. Are you in the health care/medical field?

Other comments as to affordability made by others certainly must come into play. True outcome data is overwhelming for the average lay person so good for you if you are not in the health care arena work-wise and fully understand all the nuances normally correlated with years of medical experience in interpretation of the scientifie data currently available.

Comments made by others are also equally correct. Cancer provokes a knee jerk response- get it out. PC is normally a slow growing cancer- unless you are under the age of 50 when its diagnosed. Experts can't see into the body to know precisely what is what prior to making treatment recs. It boils down to hard data /evidence and best guess based on experience and outcome data. Your assurances the cancer is organ confined has still resulted in a very high PSA and perhaps a less likely successful outcome in the long run for you. Waiting too long is also a double edge sword. I hope for your sake your chosen gamble pays off for you, I really do.

What scientific outcome data have your found re: moribidity and mortality rates for men in your age range with your specific findings? That's the kicker.
Safe trip to Holland and back and good luck in whatever ultimate treatment option you select.

As an aside, even with surgery or other treatment options there are no guarantees of a cure. That's why a Hypersensitive PSA lab test is better than a reg PSA test. PSA derives it presence solely from prostate cells. Nothing else in the body produces PSA. Those of you reading this need to realize there's no guarantee 5-10 yrs out from whatever treatment option you choose that you will be "cured'. Even after something, anything is done, stay vigilant folks.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/3/2009 9:03 AM (GMT -6)   
LJF,
Thought I would add a few words to your post, you made some good points. We are a diverse bunch of men here. We range from being unemployed with no health insurance to those that are obviously of means. Money does matter, whether we agree or not. location matters, there are less options to many who live in really rural areas. The state we live in can matter, some are more sophisicated in facilities then others. Available doctors within one's practical range makes a big difference too. Even family factors in as well, the cost and logistics of having treatment in other states, counties, etc can make or break a deal with some. As usual, a lot of factors at play.

I don't like the thinking behind the phrase "knee jerk reaction" when I man gets dx. with PCa, and he chooses in a short time to go with a certain treatment, and in most cases, robotic or open RP surgery. Many men here are perfectly healthy, save for their cancer. When they get the dx., it is horrible, frightening, scary, and shocks and awes the hell out of them.

The thought that they know something is eating away at them, and that over time, it can escape, if it hasn't already, the prostate and start spreading through their bodies is totally unacceptable.
It is a normal reaction to repel the cancer, whether we are talking about some complex like PC or Breast Cancer, or something simpler like most skin cancer. Cancer is still cancer.

And for the men who get dx. when in their early 40s through late 50s, they know the math, and they realize that if they make it 5, 10, or 15 years out from treatment, they will still be relatively young. They know they got wives, and many have children still at home, or perhaps haven't had a chance to start a family yet.

A biopsy is a best guess estimate. In more cases then less, they find higher grade after surgery, only in a few cases do they ever find less. So waiting and watching when your biopsy shows a good dose of PC already just doesn't make sense to my logic, its not like its going to get better on its own.

If you are much older, or have complicated medical issues, or biopsy with a tiny, low grade, PC, then perhaps watchful waiting with frequent psa tests and regular biopsies makes sense.

If you are younger, good health, and your current biopsy shows a pretty good grade of PC in place, I still think surgery is your best shot. A. If contained, it should get the cancer out of your body. B. The post surgical pathology will give the best and fullest understanding of how severe your cancer really is.

If you have a small prostate, low psa, and low gleason, going for seeding may be best for you, I was interested at one time, but the long term survival data was sketchy at best. And if it failed, then you would be in the dilema of knowing that salvage surgery is difficult or near impossible.

If you know that your prostate cancer is not contained, then your options have to steer towared radiation, advanced radiation treatments and/or hormones. It is unfortunate, but that is the reality.

If you are a good candidate for surgery, but choose radiation first, your choice of course, but remember, salvage surgery often doesn't work, its messy, many surgeons want do it, and it too, can fail. It's a question of sequence.

In my months here at HW, I do detect (though I am not judging) that there are men who are either afraid of major surgery and/or don't want to deal with the side affects post surgery, i.e. ED issues and incontinence. These are things that all of us that choose surgery had to think through and fight through, and to be honest, its not easy, not easy when you feel perfectly healthy and well prior to surgery, and then when you are on the other side, you have to start being a patient in recovery, and some of these side affects don't happen to resolve as quickly as we want, or our doctors led us to believe. But we do it, because we want the cancer gone.

All said, I don't think the process is "knee jerk". Walking around with high and growing PSA numbers along with a know dx of PCa, is a dangerous gamble at best. And if that is a man's choice, I respect that as well as the next. But you will never know when/if/how your cancer decides to accelerate and cross that microscopic line from being contained to being loose in your body. Thats a gamble that many of us, myself included, refused to take. My wife and family wanted their husband/dad/grandad around a few more years, and would have been angry with me if I had decided to sit it out, knowing what was known after my 3rd biopsy.

Just some of my thoughts. I respect all decisions made by all men here, its their body.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/3/2009 12:27 PM (GMT -6)   
LJF,
To answer some of your questions, I'm a retired CEO, ran some fairly large companies in the past. I now own a consulting company so I'm I'm experienced in looking at vast amounts of data and breaking it down so I can use it, and I'm also experienced in dealing with complex problems and PC is definately a complex problem. So yes I do have a leg up on most people. I'm also retired military, (got shot up in Nam) so I have good insurance.
My goal is to pass on what I have come up with to others who may not have time time or inclination to do the research. One can choose to ignore or act on the information.
Again, PC is very individual and what I'm trying to get across is that one should do everything in his powere to understand the nature of his own PC, and not base his decisions on what others have done because every case is different.
I have a transition zone tumor and it reacts much differently than most other tumors, (creating high PSA while still being contained) so my waiting and treatment is predicated on that.
As far as morbidity I feel that I have an 80% chance of cure with IMRT and some form of hormone therapy. If I have a reoccurance I think that diet and ADT3 can keep me alive for at least 15 years or longer. Others may take a far different approach based on their individual conditions and have just as good or better results.
As of today there is no evidence that one treatment option is better than another, they all acheive about the same mortality rate in 15 years so the real question for most people should be what side affects do I want to risk and live with for the rest of my life.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I had BPH and not PC but to keep getting biopsies every year just in case.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found was indolant and statistically insignificant, but PSA history was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland.

Combidex MRI in 2-09 showed all lymph node clear.

Changed diet and takiing supplements while I wait, PSA dropped from 40 to 29 through diet alone. The location of the tumor next to the urethea plus the high psa make surgery an unlikely option.

Currently on Casodex and Proscar. Consultation with the radiologist suggested adding Lupron for 3 months before IMRT. May use a combination of seeds and IMRT. Radiologist and Oncologist will get together and come up with a joint recommendation next week.

JohnT

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