Excellent resource for unbiased information of PCa issues-website

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Date Joined Dec 2008
Total Posts : 3149
   Posted 12/30/2008 6:48 AM (GMT -6)   
Many herein probably all ready use or visited this site, I used this site for my first 3 years of so of PCa encounters very heavily, back then it had a board like herein. about the owner/manager he is most passionate and has been dealing with PCa issues for atleast 10 years I believe, he is very objective, he has seen and discussed issues with plenty of laypersons and even quite a few docs and even has had some heated discussions with a couple of docs, with good merit to do so.  There is a wealth of information put into laymens terms with it and also some medical studies that are harder for use to understand that are made more clear (usually). Because of his site he has talked with and seen bio's on probably thousands of PCa cases including some very unusual presentations of PCa.
www.prostate-help.org       (Don C.-moderator-)
Info on pathology, grading, review by experts  (you will be astounded at that stats concerning reviews), various treatment protocols, biopsies, staging, partin tables/nomograms, variants/different types of PCa(there are more than you know of), psa, markers and other tests for PCa, 'sins of the industry' , and alot more.
Sins of the industry might not settle well with some people after reading it, and it is not just his own thoughts, he has seen more than enough (to some reasonable degree). After reading it you will probably agree with it all or alot of it and if you don't no problem, nobody has to believe anything. Don't put your head in the sand in the process either.
Neutrondbob/zufus-  dx 2002   bpsa 46.7 (b=first psa ever), urinary blockage 100%, 12 pos. biop=75-95% found in everyone, gleasons found 7,8,9's, ADT3 (5-6mo.); radiations Cyclotron-neutron rays(10) + IMRT-photon rays (24-sessions), ADT1-3, DES, 2-yrs no drugs, resuming DES (psa up to 1.4).....looking for psa below .2 (a goal to shoot for)

Veteran Member

Date Joined Apr 2006
Total Posts : 1732
   Posted 12/30/2008 12:49 PM (GMT -6)   
There are some amazing resources on the prostate-help site however, there is also a bit of an angry tone to so many posts/replies. At least there were 3 years ago. That's why we (Paul first, then me) changed support forums. To each his/her own. It's certainly worth a visit.


Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 12/30/2008 7:43 PM (GMT -6)   
Yeah it got some of that as you say, I don't think you can post anything anymore, isn't the board thing gone??? The hrpca (hormone refractive PCa group) has been moved to yahoo groups, but started on this site originally. Howard Hansen is amongest a great resource person and discussions on that group (alot of information, he stays on top of it, as it is also his struggle with hrpca). Anyone in high risk PCa especially if you are in the 'club' of rising and higher psa's and gleason scores or hormone resistant (refractive), you need to seek out this group, it shares alot of special information and personal treatments and medical data and newer drug protocols and even clinical trials informations.


Veteran Member

Date Joined Apr 2008
Total Posts : 1382
   Posted 12/30/2008 9:23 PM (GMT -6)   
I have checked out that site and yes I think there are some good resources.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores

Veteran Member

Date Joined Jul 2008
Total Posts : 637
   Posted 12/31/2008 8:37 AM (GMT -6)   
Bob, Thanks for the site. I forgot that I had contacted Don C . in 2005 about salvage surgery. I wish we had followed his thinking. Salvage surgery after radiation was devastating for Pete. but, I guess everyone wants to think it will work for himself. The doctors can be very persuasive with their percentages and I am beginning to think that because salvage surgery after radiation is relatively rarely done, the doctors who are doing it want to do even more of them to perfect their operations. They really dont know what they will encounter when they get in... The radiation damage can't be assessed until the operation. .So the patient suffers the double side effects of both radiation and surgery.

Where there is life there is much hope and we continue to forge ahead. Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 12/31/2008 8:59 AM (GMT -6)   
Bob, some good info on that site, not a whole lot I hadn't seen elsewhere, but I believe in gleaning data and info from any source, I don't have to agree with all of it in order to use the information.

David in SC
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. New appt. to see dr. on 1/5/9 as result.
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 12/31/2008 12:33 PM (GMT -6)   
6-8 years ago that was a vigorus site and huge board membership(internationally people on it) for posts, probably one of the best places PCa person could find info, like it is here but more data, also had one night open conversation on the net with answers and replies for people in real time (seconds-minutes). Occassionally a doc would even post something or answer something. So, looking at it now, it has changed significantly. It also has or had archives for abstracts on any protocol etc.

Personally I believe Don C. is one real world educated layperson for PCa, people might try contacting him for questions, I am not sure he will answer them but he used to.
Prostate-pointers used to have a board to post to, it has ceased to exist. Dr. Barken the PC-Ref may still have his website and board, I have not been there in 4 yrs. probably. P2P -from prostate pointers is still being answered by doctors like Dr. Strum and others. It is a way to see what Dr. Strum or others suggest for particular patients at whatever juncture they are at when they seek advice, it is good for comparitive information, helps validate what you might be doing.

neutronbob- 'hey could you say I was mavericky????
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