Is there any interest in making a list of primary PCa docs members have used and trust?

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James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 2/17/2009 9:23 PM (GMT -6)   
In another thread, Michguy said:

I thought it might be useful to use this thread, or similar one, to also allow people to name their surgeon (or, perhaps, radiation oncologist). This could be particularly helpful for newbies looking for qualified, experienced medical help. It might even be useful for users to rate their surgeons here somehow. Everything you read says you should get the most experienced physician, especially in the case of a robotic surgeon, yet there is no real registry or database to allow someone to search for a qualified individual. I don't mean to hijack this thread, but perhaps here or somewhere else, this forum could provide a real service to newcomers searching for physicians offering treatment solutions in particular regions of the country.

and

Maybe we should ask the question in a separate thread entitled "Should this forum maintain a surgeon database?" or something similar. Perhaps not enough readers check out the "Where are people from?" thread on a regular basis and are missing the opportunity to respond. (...or else, maybe there really is no interest).

Four people responded on that thread. Let's talk...what do you think? I envision any list as similar to the 'where are you from' one with maybe the members name, his doc, and their location. I can't imagine the mods would want to get into maintaining a really detailed data base.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4828
   Posted 2/18/2009 5:17 AM (GMT -6)   
Currently, people that want recommendations - ask for them...and this works well. Maybe a post in the "Prostate Cancer Resources and Direct Links to Sites" sticky suggesting that people ask for recommendations.
 
And maybe everyone could add their City/State to the first line of their signature and or add their surgeons name.
Age 53   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
 
06/25/08 - Da Vinci robotic laparoscopy
Catheter in for five weeks.
Dry after 3 months.
 
10/03/08 - 1st Quarter PSA -> less then .01
01/16/09 - 2nd Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/18/2009 7:40 AM (GMT -6)   
Being the accounting and statistics nerd that I am, I would love to see a well maintained listing of good surgeons, good oncologists, good radiation drs, and even good hospitals. If you look at the list of where we are all from, the collective information would cover a good part of the US and elsewhere. It least it would give a new person or a newly PC dx, a starting point with health care providers that our own people could vouch for through their experiences.
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
 
 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 2/18/2009 7:55 AM (GMT -6)   
James I think it might be a good idea, at least to see what members have used for hospitals, doctors and choice of treatment. Then if additional information is needed a person could contact that member directly. Probably should have made this a polling thread so people could respond without actually having to comment with a reply.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/18/2009 9:52 AM (GMT -6)   
I was thinking of something relatively simple: location, doc name, hospital name, specialty (robotic, open, radiation onc., etc.), rating (maybe 1 to 5 stars), and perhaps a very small comment. If everyone here did that, this would be the first and only (to my knowledge) publicly available prostate cancer clinician registry with patient feedback. I think it would be particularly useful for newly diagnosed patients who have no idea what to do or where to go next.
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Stage: T1c


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/18/2009 10:11 AM (GMT -6)   
I have a few to mention as good and also a few to mention that were bad or for others to leary of in their journey.
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2009 10:43 AM (GMT -6)   
Well, we sure don't want to get into a good, bad, or watch deal here. I sure don't, let me say. If we begin that, it will just spiral out more and more and become a completely different thing. I agree we might could do some kind of objective list, but do we really want to get into grading them, other than saying this is my doctor and I am satisfied with his/her work?

I like the suggestion that people just add their doctor and his/her location to a line under their name in their signature in the Signature thread. That way the treatment plan, Journey and recovery is all in one post. It would be easiest to keep current and new folks can easily add theirs to it as they come on board.

Michguy's suggestion of a thread that people adds to would do, also. BUT, it would have to be edited heavily to keep extra comments, discussions and such from breaking out, to keep it managable. The tendency is to turn almost any thread into a chat, instead of sticking to the subject, which is fine for most threads, I'm not complaining, mind you...lol. People would have to understand and accept that the thread would be kept cleaned out and be just the info that it was formed for.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months

Post Edited (James C.) : 2/18/2009 9:47:34 AM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4203
   Posted 2/18/2009 11:21 AM (GMT -6)   
I like the idea. The only list I now know of is on the PCRI's web site. I kind of like the idea of grading, like Amazon or Ebay does. I should contain radiologists as well as oncologists.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/18/2009 11:27 AM (GMT -6)   
Any grading system would be easy fodder for a lawsuit, even on an internet based site such as this. And any grading would be so subjective for starters. I think the value in posting information is the range and variety of urologogists, radiationolgists, oncologists, surgeons, hopsitals, etc that have been used by all of us. It would be an encouragement and a good starting point to anyone new to PC or the newly dx. We cover a lot of states in the US, and some have used resources out of their own states, which adds to the list, and then we have those from some of the Canadian provinces and elsewhere.
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
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2009 11:54 AM (GMT -6)   
Any grading system would open the owner of HW to liability. The original request was for a simple list of members name, doctors name, and location. Just a basic list. Anything beyond that raises several problems.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 2/18/2009 1:45 PM (GMT -6)   
James C. said...
Any grading system would open the owner of HW to liability. The original request was for a simple list of members name, doctors name, and location. Just a basic list. Anything beyond that raises several problems.


When this thread started I wondered about HW liability. When you mention grading good or bad that could bring in the lawyers. I'm not even sure a personal recommendation list wouldn't either. The safest for HW would be kind of like the location list now, with members here willing to take it offline from here with their personal recommendations to people in their areas. Of course a member here can still make a post asking about their doctor and if anyone had any experience with them or a clinic/hospital. Whatever you decide run it past the powers to be at HW first.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2009 2:49 PM (GMT -6)   
Peter- the owner- has been made aware of the discussion and asked his thoughts on it.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/18/2009 2:50 PM (GMT -6)   
Lawyers?? Don't lawyers get prostate cancer? If there are any lawyers on the forum, now would be a good time to speak up. If we don't hear from any, then I think we've discovered a new prostate cancer treatment option: become a lawyer!
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Stage: T1c


BDJC
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/18/2009 2:57 PM (GMT -6)   
Sounds like a great idea to me.

mirv
Regular Member


Date Joined Nov 2008
Total Posts : 30
   Posted 2/18/2009 3:28 PM (GMT -6)   
When I first encountered this disease a big source of anxiety was trying to find a decent doc who did Da vinci AND that my HMO would pay for. Eventually it all worked out, but I think it would be a great idea for everyone to at least say who their doctor was and where he was located so that new members can see a few of the doctors out there. Even if it's just in each individual's signature I still think that would work............
Age 52
PSA 3.1 fPSA 26% Dx: 11-07-08
1 of 12 cores with 5% adenocarcinoma
11 of 12 cores clear Gleason grade 3+3=6
Robotic laproscopic surgery 2-4-09
Dr. Garret Matsunaga, Torrance Memorial Hosp.
Free hernia repair! 2 day stay.
Pathology: pT2c NXMX
upgraded to 3+4=7 and <2% tertiary 5
negative margins
negative extraprostatic extension
negative seminal vesicle invasion

Post Edited (mirv) : 2/18/2009 2:31:09 PM (GMT-7)

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