How Many Prostate Forums do you Read & Post On?

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Heavy Leaker
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/11/2010 8:05 AM (GMT -6)   
How many prostate forums are you active on & do you prefer one over the others?  If so, what are the reasons?  I'll start.  I read this forum & the Prostate Cancer Forum on Cancerforums.net.  I read the other forum a lot before my surgery & just found this one a couple of weeks ago.  It seems that this one is much more active & so far I have been able to read a lot here about my particular problem of incontinence!
4 biopsies over 4 years starting in 2006, 4th biopsy showed 5% of one core Gleason 3+3=6.  PSA in 2005 6.0, rose to PSA 18 shortly before surgery.  Chose surgery over radiation due to conflicts in PSA versus biopsies.  PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09  T2B Tumor 30% of prostate  involving left & right lobes  NOMX Gleason 3+4=7  Urethral Resection margins &  resection surface clean Seminal vessicles clean.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/11/2010 8:46 AM (GMT -6)   
I read this one and FrankTalk. Occasionally, I look at a other sites but these are the ones I check frequently. I started here when beginning my journey and, (I know this is going to sound sappy, but...), it almost seems like family. I want to know how things work out with the guys.
I have not told my coworkers about my situation, but I can very comfortably say to you guys: "Hey I have ED, just finished breakfast and have already changed my pee pad twice." I value that freedom.

Plus I collect all my frequent answer points to get free procedures at Uro clinics serviced by Delta. ;-)
Jeff
---I couldn't end it on a serious note.

Post Edited (Worried Guy) : 2/11/2010 7:00:25 AM (GMT-7)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4848
   Posted 2/11/2010 8:50 AM (GMT -6)   
Only here for me.



Age 54   - 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
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.

Post Edited (Steve n Dallas) : 2/11/2010 1:08:57 PM (GMT-7)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/11/2010 9:09 AM (GMT -6)   
I read and post on this one, Yananow and FrankTalk. I found Yananow first when I was diagnosed and then this one shortly after.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/11/2010 9:55 AM (GMT -6)   
I found this one first, lurked here a while, and joined in October 2008. I have never even looked for or been to another site like this

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 2/11/2010 10:06 AM (GMT -6)   
I am on this board almost daily. You guys have become family in a strange kind of way. I also look at FrankTalk.com and get post from Prostate Cancer Info Link.

Thanks to you guys you have made this journey easier and I feel less like a freak. Misery loves company!

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 2/11/2010 10:08 AM (GMT -6)   

This site, HealingWell, tends to be more of this type of discussion:  "Hey I have ED, just finished breakfast and have already changed my pee pad twice.  What should I do?"  This is more of a “chat/chatter room” site.

I also visit another site called HealthBoards.com to look for solid layman's understanding of the technical issues with PC.  I have periodically referenced (via links) some of the valuable technical discussions from that site here in some responses.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 2/11/2010 11:13 AM (GMT -6)   
Only this one on a regular basis.  I will check (but not post) on yananow very rarely.  Like Jeff, I find the frequent poster points here to be a real plus.  I'm trading mine soon for a new flat screen TV.
 
Tudpock
Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/11/2010 11:28 AM (GMT -6)   
The first site that I found was yananow which my uro told me about. I posted there once and that led me to this forum which is the only one I read and post on. I did sign up for franktalk but I don't really use it.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/11/2010 11:28 AM (GMT -6)   
Hey Casey
I like that there is a mix of serious and light, info and venting. Does the Healthboard site have discussions of the resolution of PSA testing and pricing? Or the best way to attach a pee pad for reduced leakage? Or where to get the best deal on meds? (I really don't know- I have not visited that site.) I'm a technical guy and have no trouble looking up and finding specific info. But, that is a solitary activity for me. I get in, find it and get out.
On HW, the signatures and associated treatments and histories are valuable as well. It is interesting to see the range and how I fit in. I confess that after a while, the stats become more than just stats and turn into individuals - and then I want to know how the guys are doing. I am following three threads now relating to Slings since they might be in my future.
So yes, there is chatter, but that is easy to filter. I just don't click it if I am not in the mood.

After all is said and done it might be the personal connections made here that I find most valuable. I've met some truly great guys.

J

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 2/11/2010 11:33 AM (GMT -6)   
I didn't say one was better than the other...just answered the question about the different forums I visit, and gave a (value-added) description of how they are different.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/11/2010 11:40 AM (GMT -6)   
Casey,

While I encourage true freedom of speech and opinion without censorship, I felt your post above to be a bit on the cold and unfriendly side. HW is not meant to replace sound medical advice and medical opinions we all get from our personal medical communities. Plus, the internet has hundreds, if not thousands, of straight medical talk and technical discussion. What HW Prostate Cancer has been known for is being the best patient to patient site out there. And I agree strongly that it is.

If I were looking for technical talk, and wanted specific answers to my medical woes, I would bring it up with my doctors in a heart beat. I can only speak for myself, but I enjoy the interaction we have here, from man to man, women too, about our PC journeys. HW Prostate Cancer is a place to find hope, to find courage, to encourage one another to keep fighting the fight.

No one has it easy here. We have each earned our way into HW Prostate Cancer by the nature of having a fight with the beast PC. All of us are different in every possible way. Each of us have a different level of understanding these complex journeys, different ways of handling the pain (for some), the fear (for most), and looking to the great unknown ahead (all of us).

Together, we do have a strong brotherhood. Real friendships are and have been made here. Many of us "vets" stick around because everytime you turn your back, a whole new group of brothers enters our doors, fresh with a PC dx, scared to death, not sure what to do, or where to turn. So we stay to help, and by helping others, we help ourselves.

If I wanted an encyclopedia answer to the fine points of PC, I wouldn't come here. Plenty of doctors and medical pros I can talk to, and plenty of online sources for straight facts and data.

I believe in the united brotherhood here at HW Prostate Cancer, because I am one of them. Nothing more, nothing less, just another "joe" on an extended journey into the world of Prostate Cancer.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/11/2010 11:48 AM (GMT -6)   
I participate on this one, and once in a while read Paul's FrankTalk site, as new stuff is added.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 2/11/2010 11:55 AM (GMT -6)   
Sorry, you misunderstood my characterization of the other site, David. It's got more of the "solid layman's understanding of the technical issues." Not an encyclopedia. Also not a replacement for medical advice.

On the other hand, I think you did understand my characterization of this site. Much more friendly chatter (I didn't give an opinion as to whether this was either bad or good), mixed in with some personal opinions and suggestions. [I will observe that the opinions do sometimes--not all the time--seem to be "all over the map" and sometimes seem to be opinionated WITHOUT sound back-up or even sometimes counter to basic medical concepts, which certainly causes additional confusion to newcomers...this will be the one and only somewhat negative comment I have about HW, and luckily this is infrequent.]

If you've never been to any other site (you already said you hadn't), then it is understandable that you might not fully appreciate the differences I have described.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/11/2010 11:56 AM (GMT -6)   
David,
Casey's answer and comment was perfectly reasonable and that's how I took it. He was showing a style of question. I'm not offended.
I think he is saying: if you need to find technical answers then HB might be better.
If you want to a little to know some tips and tricks from guys who have been through it, then HW might be better.
I'm saying if you want a day brightener then maybe HW is better.
Jeff

Tud, When you cash in your frequent poster points you get double the prizes by claiming the GFMPH discount.

--------------
Edited by me. An addition: :-)

HW does have some original technical research that is unpublished on other sites.
Nowhere else will you find bomb calorimeter data run on pee pads- useful for determining the heating value when burned in wood stoves.
Where else would you go to get answers to pressing questions like:
While standing, how much energy can be recovered by harnessing the steady drip of incontinence and how many LEDs can you power with it?
What is the effective orifice size of the leak? (70 um).
How many full pads does it take to raise the temp of a room one degree?

Clearly, it is dangerous to leave an incontinent, competent, engineer home alone post surgery.
Jeff

Post Edited (Worried Guy) : 2/11/2010 10:30:41 AM (GMT-7)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 2/11/2010 12:41 PM (GMT -6)   
Jeff, by the way, I'm glad you didn't take offense to my reuse of your HW sample posting.  I laughed when I read yours, and thought you would appreciate it's reuse in the same spirit.  wink

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/11/2010 1:05 PM (GMT -6)   
Casey,
No problem at all. Absolutely I got it. (I always assume no offense is meant and it was either poor wording or low blood sugar that caused it to sound bad.)

Jeff

And in case you can't sleep tonight without the answers:
One Depends Men's guard, with the wrapper, contains 472 BTU. 232 Pee pads = one gallon of gasoline.
And the potential energy recovered from my drip drip? Put a generator in my ankle and I can extract 20uW.

How's that for value add! :-)

t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 2/11/2010 1:11 PM (GMT -6)   
i post only here but also read the yana site. i really like the different views here both technical and emotional and have gained great insite into this curse. i also really like the fact that folks can disagree on something respectfully with it turing into a bash fest. tim
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci performed Feb 2k10 by Dr Marc Milsten [hes got mad skills]
99% continent from cath out, we`ll see about mr happy
path showed same gleeson with no other blips other than one slight margin, organ confined 20% right, 5%left, 34grams
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/11/2010 1:49 PM (GMT -6)   
I know this is off topic but it was derived from something I mentioned in an earlier comment.

Making assumptions for: the number of cases of PC diagnosed per year, the average age at DX, the average death age, percentage of surgeries, 2/3 are continent at 3 months, 1/9 are incontinent at 1 year, 1/12 incontinent at 2 years and beyond, average pad usage is one guard per day,
The US could save 6600 barrels of oil if men air dried and burned their pads rather than landfilling.

Of course, divorce attorney demand would increase to more than offset the energy saved. I suggest we consider this option only for single men. Still, that saves about 2200 barrels of oil per year.

Jeff

In case you were thinking about it, Goodlife, woodguy and I are not accepting used pads to heat our homes.

Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 2/11/2010 2:51 PM (GMT -6)   
Originally I was all over the place, I only made two post on another site.  I have exclusively limited my time as far as forums go to Healingwell.  I do spend a bunch of time reading medical publications on various sites
Hero

RoboGuy
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 2/11/2010 4:00 PM (GMT -6)   
I check this one daily; know I do not post often, but do find good info here and keep up with progress of others. Last checkup was good and numbers staying below 0.1.
Age:60
Diagnosed 10/07; 2 0f 12 positive, T1c, Gleason 6

Initial PSA of 4.6, DRE Negative, Brother(5 yrs. younger) had PCa
diagnosed month before.(he is doing good, also after rp)
Bone Scan, Cat Scan, negative

daVinci Robotic 12/15/07; Pathology 25%-one side, margins all good

Final Gleason 6, 3+3

6 wk. PSA=0.06!, 6 month = 0.06, 12 month=0.04, 2 year = 0.06

No incontinence after catheter removed, Yeh!

Levitra + pump works; little response otherwise; still same at 24 months


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 2/11/2010 4:42 PM (GMT -6)   
I primarily use this site now as my source for info at a patient to patient level, with some sadness, gladness, support and humour. Regardless of the topic and what is said the messages here have an underlying feeling of HOPE. I know this has been an overused word in the USA and Canada but it helps people get through another day.

I was initially on a gaymen's group but found that the majority of topics were on two main things - whether or not mr. happy was hard enough, and comments of the bisexuall members cheating on their wives. I did not feel welcome there at all. I gave it a couple of months, but have withdrawn from that particular group.

I will be checking out the yananow site and see what it has to offer.

all the best

hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis
location: Peteborough, Ontario, Canada
............


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/11/2010 5:07 PM (GMT -6)   
Primarily this is the site I use (to read and to post). However, the first site I found was the prostate cancer board on CancerForum.com. The PCa board there is not nearly as active as it is here, and there isn't as much information sharing. But. Cancer Form has boards for just about every major cancer type: lung, breast, pancreatic, skin as well as prostate.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/11/2010 5:56 PM (GMT -6)   
I usually frequent Healingwell and Yananow and occassionally drop in on a couple of others to see what happening. I am somewhat dissapointed though when ads such as these two appear at the top of a Healingwell prostate cancer page. These ads while offering dubious products and services  outright lie when dismissing conventional treatments for PCa. I know that revenue has to be raised to finance the site but there must be quality advertisers out there.
 
 
Bill

Post Edited (BillyMac) : 2/11/2010 4:01:49 PM (GMT-7)


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 2/11/2010 5:57 PM (GMT -6)   
I only read and post on HW, mainly because I found it first and it immediately started providing the answers I was looking for....haven't felt the need to look elsewhere yet. I also personally like the fact that you get both frankness and some humor. To weather the storm you sometimes have to learn to dance in the rain.
 
Joe 

Age -67 PSA - 4.5

Biopsy  (9/4/09) - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive. Gleason 3+3=6. Stage – T1C  Ct and Bone scans negative.

 

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Blood in urine for a week. Side effects as expected -  some burning, frequency, urgency.   Resumed daily  1 ½ mile walk after 3 days. Side effects have subsided some in the last week.

 

BT followed with 25 IGRT treatments beginning Feb 11. 

 

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