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RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1268
   Posted 10/6/2010 6:27 AM (GMT -6)   
I started on one PCa forum about two years ago looking for information.  Now I at least look at three PCa forums almost every day.
 
I've learned a lot, and hopefully offered some useful advise ... but I think that I have become addicted.  
 
Anyone else feel the same way?

ejn
Regular Member


Date Joined Jun 2010
Total Posts : 87
   Posted 10/6/2010 6:56 AM (GMT -6)   
Exactly...me too.
 
Ed

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 10/6/2010 7:10 AM (GMT -6)   
me 3,......... except I'm now on five forums. This one is the most active, and I'm also on, cancerforums.net, webmd, franktalk, and ustoo.org

I appear to be obsessing just a little. Wonder if a Gleason 9 has anything to do with that?
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Post Edited (kbota) : 10/6/2010 6:18:03 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/6/2010 8:20 AM (GMT -6)   
i will break the mould here, i have never been to any other pc forumn but HW, and been faithfully here ever since.
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 marg
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 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 10/6/2010 8:26 AM (GMT -6)   
me 4, .... but trying to break away and deal with the daily life now, not focused on the what-if's in life....
-when I first signed on, it was to get information about how to cope after surgery (I discovered HW after surgery ), and from that, learned about all the different options out there for those with different levels of PSA and gleason , etc...
- and then it turned into support ( in which I am very grateful) and seeing others just like me ( gleason 7 - stage 3a cancer) so you do not feel so alone....

-others may sign onto multiple forums to get the answers they want to hear ( just like in the real world, patients visit doctor after doctor until they get one that agrees with their personal self-diagnosis) whether it be choice of treatment, or opinion of choice of treatment, etc.

-if it takes one forum to get you through the day - go for it ... if it takes multiple forums to get you through the day (as long as it does not impede real world contact) - the more the merrier - you got through another day -

-and that is a good reason to celebrate....


cyber hugs
BRONSON

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 10/6/2010 9:36 AM (GMT -6)   
Since my husband's surgery, it's only been HW. As long as he's still not 100%, I know I will be a frequent user. Addiction? Hmm, I did say "user", didn't I..
Husband 60yrs., no symptms: PSA 10/04 2.73, 12/06 3.64, 5/09 3.9, 10/09 4.6, 1/10 5.0w/ free PSA 24
6 core biop 4/1/10 path rept: rt mid: adnocarc. G=3+3, 5% of core; R apx v. susp. minute ca, R base bnign w/ mod. atrophy, L side atrphy only; 2nd opnion JH confrmd
MRI - 15mm nodule
BiLatRP surg 7/6/10, path: T2c, nodes, sem.ves, extra caps. neg., adenoc both sides G=3+3 cntinent, Viagr-8/27 ED

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 10/6/2010 10:34 AM (GMT -6)   
I am only on this one and I also get daily emails from Prostate Digest and Urology Today.
 
As I mentioned elsewhere, I tend to post a lot more near PSA time.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 10/6/2010 12:02 PM (GMT -6)   
This is my only forum and I'm not addicted to it. I just find it impossible to stay away :-)
Wishing zero PSA for all.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 10/6/2010 1:31 PM (GMT -6)   
Only HW for me. I do worry about it some....don't want PC to hold me hosgage. I have backed away a little....but then I remember how great it was to tap into all these sources and experiences when I was first diagnosed. So I come back in the hope that I can provide a scrap of information that might help somebody find their way through the dark.
Age 67 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. Normal activity within 3 days. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA on 5/26 - 0.1 PSA on 9/1 - 0.1

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 10/6/2010 3:14 PM (GMT -6)   
Only forum I have joined. Though I look at others, get Google news updates, always follow up on anything that sounds of interest.

Ideally, for me, and others, i'd like to hope that treatments eventually worked, 6mo or yearly psa tests start feeling like a formality, you no longer define yourself in the lens of being a cancer patient, were fortunately able to move on with your life, hence you wouldn't be coming to this site on a daily type basis.

At this point in my life, 4.5 months after rp, with what I have been through, knowing what many others are going through, even if I was lucky enough to "move on" with my life, I cant envision a scenerio where I wouldn't come back here if only to give reassurance to some young guy(s) that comes after me/us.. as I realize that I have become an old man myself. *But i'd much rather there was a cure so nobody else has to go through any of this.

Good thoughts going out to all. Bob F.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 10/6/2010 4:10 PM (GMT -6)   
My advice to you who want to back away, don't go to a GFMPH gathering, like the next one in Baton Rouge in April.

Once you meet some of guys that are on here, and realize what a neat bunch of guys are attached to the monikers they have used, you will be even more desirous of keeping in touch. Even worse, you will start calling and e-mailing them.

I don't anything about the other groups. But this forum has some really great men who are caring individuals. I hope to meet many more.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/6/2010 6:55 PM (GMT -6)   
I have to say this is the only PCa forum I am on and love it. I do not check it two or three times per day anymore however I do check at least twice per week.

Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/6/2010 6:55 PM (GMT -6)   
I have to say this is the only PCa forum I am on and love it. I do not check it two or three times per day anymore however I do check at least twice per week.

Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 10/6/2010 7:05 PM (GMT -6)   
I started looking on here when my husbands psa was rising,[no PCa] I became interested in a few of the stories and wanted to see how they turned out,I have thought about a few of you guys often and hoped for the best! I also became a fan of JohnT, great advise cool & calm in a storm {PCa}. Also so very glad Purgatory is doing good after the hell he's been through! Maybe a little bit of addiction lol!!!  Cooper 

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 10/6/2010 7:31 PM (GMT -6)   
Goodlife said it great. I have been so fortunate to have a good DX and better yet I have met face to face with several people from HW. The common bond and caring is so warm. I like Goodlife enjoyed the GFMPH weekend so very much that I am going to host the spring meeting of GFMPH in Louisiana in April. Yes we check HW daily to see if one of our friends have posted. We e-mail each other with updates about lots of things not just PCa, and from time to time we call each other just to hear that voice again.

My life has been richer for having had the chance to meet fellow HW members. If you ever have the chance go for it you will not be sorry.

The invitation for April is open.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED
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