How often do you peruse HW

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 9/12/2010 6:40 PM (GMT -6)   
Here is something I've noticed. When things are going well and I am living my life without (unduly) worrying about an upcoming PSA, I will peruse HW once or twice during the day. I might get on the Wednesday night CHAT, but many times it just slips my mind.
 
When I am nervous (specifically due to an upcoming PSA test), I find myself checking HW maybe 4-5 times per day. In fact, that was the first sign that I was starting to worry internally about the next PSA test! I found I was checking HW quite a bit... and then I realized why!
 
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. Next PSA late Sept.

Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 9/12/2010 6:53 PM (GMT -6)   
Mel, I agree with you 100%. I could go days or even a week without getting on HW, but as a PSA test gets closer I tend to get on the board several times per day. I guess it's human nature.
Age: 63
Gleason grade: 3+4=7, present in both lobes, pT2c NX MX
Robotic RP: Sept. 15th, 2009
PSA's: .04, .03, .02, .05 (darn)
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/12/2010 7:02 PM (GMT -6)   
I probably check into to HW three or four times per week and several times on the weekend. I do agree that as test time nears I find myself checking in more often. This forum has been awesome support to me.

peace and love
Dale

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/12/2010 8:22 PM (GMT -6)   
I try to check it often enough so that active threads that I haven't seen don't roll to page 2. I kind of like to get the gist of what is going on. Just nosey.

Can't really say PSA jitters make me check it any more frequently, but I like to make a b-line to it to report results.
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

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/12/2010 9:21 PM (GMT -6)   
Interesting question, Mel. I too am flighty. When I was first diagnosed and trying to decide on treatment, and then after surgery, I was here a couple of times a day. Now, some days I'm here three/four times, (usually to see if there is new news on a thread I'm interested in) and at other times a week, or two, can go by and I don't make it here.

I think this is the first time I've been here in ten days or so, for example. It's not that I don't love you guys, and worry about many of you, it's just that I get busy with the rest of my life, get swamped, and don't have the time.

One big problem with being away for a couple of weeks is I lose touch, and then I have to find a huge chunk of time to come back, just to get caught up on the first page, much less the second. One thing about coming often is that each visit can be shorter.

Cheers to all.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/12/2010 9:24 PM (GMT -6)   
Sheldon, I am always excited to see you post here at HW, even if you don't have much time. You are one of our great Canadian brothers, and love your input!

David in SC
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.

dsmc
Regular Member


Date Joined Jul 2008
Total Posts : 149
   Posted 9/12/2010 9:37 PM (GMT -6)   
about every day. Like Goodlife I hate to have to go to page 2....lol And some days 2 or 3 times.
Good stuff and I like to check on my buds.

David
Age 55
Pre-op PSA 4.3
Surgery Feb. 17 2005
Post-op Path : Gleason 3+3=6
Right pelvic lymph nodes: negative for metastatic carcinoma
Left pelvic lymph nodes: negative for metastatic carcinoma
extent: right lobe 40% left lobe 10%
capsular penetration: Absent
Seminal vesicles and vasa differentia: Uninvolved
Prostate: 26 grams
Post-op PSA's <0.04 for 3 years
Feb. 08: 0.07, March 08: 0.08, June 08: 0.09 and Sept. 08: 0.1
IGRT scheduled.....November 17th....
FINISHED 01/14/09
05/14/09
1st PSA after SRT <0.04
12/03/09
2nd PSA after SRT <0.04
06/03/10
3rd PSA after SRT <0.04

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/12/2010 9:38 PM (GMT -6)   
Hey, David, you're one of the BIG reasons I keep coming back!

What a nice thing to say. As our English friends would say, I'm totally "chuffed" ! ! !

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 9/12/2010 10:11 PM (GMT -6)   
I try to check in at least once a day.
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

TDK
New Member


Date Joined Sep 2010
Total Posts : 11
   Posted 9/13/2010 8:25 AM (GMT -6)   
I've been checking this board daily, but then, I've only been a member of this board since last Thursday. Even so, I've learned more these past few days then I have through discussions with my urologist.

Seems to me that it would be nice if the medical community would point their patients to support groups like this at least at the time your DX (maybe some do and mine just didn't). Would have helped me during my initial decision making process. I didn't know what to do or what questions to ask, my urologist said " Here, read this book".

In retrospect, I can say, Thanks alot Doc. you tell me I have PC and then you tell me to go read a freaking book. But, I suppose I was in shock or denial so I went away happy to read my book.

Now I suppose I could have taken the initiative on my own to seek out a group such as this, but who is thinking that clearly when you get the news that you have PC, even family members didn't think to search out groups such as this (at least mine didn't. Lucky are those who did get that advice). I guess that if you have never dealt with something like this during your life, you don't initially think to look "outside-the-box".

Well, that's enough of that, bottom line is, I'm happy at this point I discovered this board (post LRP) and I check it out daily and maybe at some point I'll be able to contribute something worthwhile in return .......
Tim in New Mexico

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 9/13/2010 3:32 PM (GMT -6)   
   I'm here a minimum of once a day. I honestly couldn't have possibly gotten through all this without this forum (you guys) and the advice of those who came before me.
steve
50 Yrs. old. DX Feb, 2010 w/6.6 PSA.
Biopsy 04-24-10, Gleason 3+3=6
4 of 5 cores left side inv. 4 of 6 rt side
RRP 06-07-10....
16 days post-op, catheter out.
Gleason upgraded to 3+4
No involvement of lymph nodes & seminal vesicle.
Perineural invasion present :(
Totally continent @ 8 weeks post-op. (!!!)
1st post-op PSA @ 12 weeks - Less than 0.05

STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 9/13/2010 5:06 PM (GMT -6)   
Generally four or so times during the week. Never on weekends. I haven't noticed any relationship to upcoming PSA tests. I'm getting one next week. We'll see if that changes.

Mimi723
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 9/13/2010 5:27 PM (GMT -6)   
I'm around for the long hall. Just lurking gives me information I can use to help my husband.

Technology has provided us with new levels of friendship. Sometimes I check in just to see how you are all doing.

Mimi
Husband, 62
Gleason 6, PSA was 6.6
RP Surgery was Aug. 16
No lymph node involvement; tiny bit of cancer on outer wall of prostate.
Heart bypass/carotid artery surgery in 2003

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/13/2010 6:22 PM (GMT -6)   
Entirely a subjective and personal question here. No right or wrong answers. I understand why some people are here often, myself included, and I understand why some burn out and want to stay away - as it keeps their PC on the front burner by being here. I think what anyone is comfortable with is the correct answer.

Some communicate best by talking in person, talking by phone, by texting, etc. And some by writing. I am not a phone person, all I have is a crude basic no frill cell phone, I only text when I have too. I like to write, have all my life, so its a good medium here for someone like me.

For you guys that have my number, you know how hard it can be to reach me by phone, lol, honest, not ditching your calls, my phone is rarely near me unless I am expecting a call, lol. Sure, that really is true, lol.

David
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.

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/13/2010 7:21 PM (GMT -6)   

Usually, I'm away quite a bit and don't look in. I try and check and at least read what's going on as often as I can. Lot's of good discussion and experience here.

I have my 18 month post-op PSA coming up and there is no real reason I know of that I should be anxious. But, I probably have the worst case of (PSA) anxiety going on than I've ever had.

So, I have a look in here and know I'm not always alone in those feelings. That's a good feeling in itself. 

 

 

 

 

 

 

 


-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 9/14/2010 8:47 AM (GMT -6)   
I check a couple times a day. I check for new information and like to keep up with everyone. Interesting, I have never met anyone on the board but feel like I know most of everyone. We are able to share things about our PC we don't share with others.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue

jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 9/14/2010 12:47 PM (GMT -6)   
I usually check daily except on weekends where I'm pretty busy.
 
As said, I do check more often just prior to my PSA tests when I'mm somewhat more anxious.
63 yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 8-10-10 -0-

PSA 9-21-09 -0-

1 year PSA 5-3-10 -0-



Thriving, not just surviving!

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 9/14/2010 3:49 PM (GMT -6)   
Pretty much once per day. Not tied to PSA tests. For me, it is to support others if I can....like the members supported me when I needed it. I also find that I continue to learn new things about the disease, treatments and side effects. Finally, I am just encouraged to see good people from around the world trying to help each other deal with the scary, confusing world of PC.
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
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