Online Interaction ~ Does it help?

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/9/2008 5:10 PM (GMT -7)   
My reply was yes.  My experience was this site.  Very intriguing. After you read the article, check out the interaction he is refering to.
 
Article in MH...
 
Forum interaction...
 
 
Edited ~ Revised the sites.
 
Tony

Post Edited (TC-LasVegas) : 7/9/2008 9:43:47 PM (GMT-6)


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 7/9/2008 5:18 PM (GMT -7)   
The information shared, including personal experience with various aspects of prostate cancer, is invaluable, so I certainly say yes.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008

Post Edited (DanmanBob) : 7/9/2008 10:28:00 PM (GMT-6)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 7/9/2008 5:40 PM (GMT -7)   
Without a doubt. For me the key sentence in the article was:
''When patients managing the same chronic condition share observations with each other, their collective wisdom can yield clinical insights well beyond the understanding of any single patient or physician.''
While doctors may well understand the nuts and bolts of a disease unless they actually suffer from that disease themselves there is a gap in their full comprehension that can be filled by collective experience. I for one, have gained a far better understanding of PCa by both the members here and their reference to information sources than I have from all the doctors I have seen. (I wouldn't let any of you operate on me though :-) )
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable

Post Edited (BillyMac) : 7/9/2008 6:43:45 PM (GMT-6)


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 7/9/2008 7:20 PM (GMT -7)   
I would have been lost and in a mental ward if not for the Great People on here.

KW
    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
 
     


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 7/9/2008 10:25 PM (GMT -7)   

Hi everyone!!

I think I have learned more about PC on the internet than in the Drs office. I find that if I dont understand something I get the answer here. Yes I think the online info is good!!!!

Plus you get to know really nice people and you dont feel like you are going thru this alone!!!!!

 

Diana


Rick & Diana
Age 68/ 67@ Dx
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
3-6-07 Triple Spinal Fusion (due to old back injury)
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
9-26-2007 PSA 0.07
11/1/07 PSA 0.1
11/30/07 PSA 0.12
01/31/2008 PSA 0.3
03/01/2008 PSA 0.3
04/28/08 PSA 0.6
06/18/2008 PSA 0.74
06/24/08 45 mg Eligard 6 mo shot


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 7/10/2008 6:10 PM (GMT -7)   
This site and people here have been a Godsend to me. The wealth of knowledge here is invaluable.
Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 7/21/2008 5:59 PM (GMT -7)   
Absolutely...keep checking it out...Di
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation 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
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
In line for AUS possibly in Sept 08


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/24/2008 7:35 AM (GMT -7)   
Forum interaction...
http://prostatecancerinfolink.ning.com/forum/topic/show?id=2034917%3ATopic%3A18134

Was very excited to see this URL. Note ning.com within the URL.

A prior co-worker and friend of mine joined Ning a year ago. It's a start up company that provides the ability for people to create social networking sites. The Internet is an amazing tool and source of information. Ning is one of those "Internet properties" that will become very important like FaceBook or MySpace in reaching individuals around the globe with targeted information that is relevant to them.

Glad to see it is being put to good use. I forwarded the URL to him. Thanks Tony for including this link at Healing Well.
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 7/24/2008 7:51 PM (GMT -7)   
 
eyes  n-line discussions are worthless and don't do anyone any good.  Only the doctors know what is best for you.  What do a bunch of mechanics, salesmen and accountants and teachers know about prostate cancer? eyes
 
Actually, I have never heard anyone make the above statements, but early on I sensed that new posters had concerns about the information that is generated here and at other internet sites. They were freightened and wanted answers.  They wanted to learn.  Actually my first "name" when I signed on in July of 2006 was "Willingtolearn" I have learned a whole bunch since that time. My first post was angry, apprehensive and in retrospect, sort of stupid.
 
I have been clicking on here now for  two years.  During that time I have seen people come and go, but what I always see, almost every day is SOMEONE NEW who either has prostate cancer or is worried that they might have prostate cancer. I am still here, two years later, because I care and because this particular on-line discussion might be the best there is for prostate cancer. I admire and thank our volunteer moderators, who must respond to each and every one of those people who want to learn.
 
I am told that there are more than 20,000 new prostate cancer cases diagnosed every year.  That means that since my diagnosis over 40,000 new cases have been diagnosed and "treated (a)" in the USA alone..A lot of them find their way here, if more of them did, we could not cope. I can't imagine...(a)treatment of course varies. edit...I think I forgot a zero in the numbers of prostate cancers a year.  I guess that number is the number of deaths and the diagnosis level is more like 500,000.
 
So, I support on line discussions of medical problems, particularly prostate cancer. 
 
 Today I went golfing with a group of four old friends.  By chance each and every one of us has been treated for prostate cancer during the past 36 months.  The first had open surgery and says, he has no "serious" problems.  The second had brachytherapy two and one half years ago and is doing well except some urinary blockage and minor ed problems at times. The third just finished an IGRT therapy program and is on  18 month Lupron therapy. The lupron guys know what he is going through.  I had DaVinci surgery and at this time show no new PSA involvement despite a gleason 8 beginning. My gleason 8 was the highest of our group.
 
I am the only one who admits to using the internet for support.  I am the one who the others ask questions of regarding recovery.
I certainly don't have the answers, but thanks to all of you I have more knowledge than before.


PSA up to 4.7 July 2006 , bump noted during DRE
Biopsy 10/16/06
T2A, Psa 4.7
Gleason  4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion found
No continence problems
PSA 90 day -.01  , 6 month -.01 , 9 month +.02 , 1 year +.02
Using Bi-Mix or VED 
 
 
 

Post Edited (lifeguyd) : 7/24/2008 9:02:05 PM (GMT-6)

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