It's insanity, I say...

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riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 3/27/2009 7:34 PM (GMT -6)   
I have been lurking here for a few months...ever since I had a somewhat high PSA for my age (3.25/45 years old)... Had a re-check...a month of Cipro and another check and the PSA is still in the low 3's...so I have a biopsy scheduled Wednesday. 
 
Let me first say that I have the most respect for the members here - for what they have been through and for the help they offer every day to strangers.  And I am perfectly aware that I very well may NOT have PC...so I really should not whine and complain...
 
However the background noise of the past couple weeks (PSA/over-testing/over-treatment/blah, blah, blah) is enough to paralyze a person who is still in the decision making process.  The PSA test is ridiculed...the biopsy effectiveness is challenged...and of course, if cancer is found the treatment options can be debated until exhaustion.
 
It's probably a function of where I am RIGHT NOW, but the biopsy has got me pretty worked up...not the fear or the pain...rather the needle-in-a-haystack accuracy of the thing.  In the past few days I have read about people who have been scored with "average" Gleason sums as a result of biopsy pathology.  Some have gone through with surgery to find later that their post-op Gleason has been much higher...some have gone through the surgery just to find a post-op Gleason much lower.  Prime examples being Dana Jennings excellent blog in the NY Times http://well.blogs.nytimes.com/tag/jennings/ where surgery discovered a more agressive tumor than expected; one that likely would have killed him had he waited.  Then there was a post here just today where cancer was downgraded from a Gleason 6 to a 3 after surgery pathology.  A "3"...are you kidding me?  That's like cutting off your arm for a freckle that got a bit bigger and turned brown (no disrespect intended for the gentleman in question)...
 
So, assuming the worst (and hard not to)...am I going to get a Gleason 6 in one of my geometrically placed needle sticks when a bigger and badder cancer could be 3 millimeters away?  Crazy.  Will the needle miss something altogether?  Or will something be found and be scored incorrectly (I've been reading about Gleason "inflation" as well...where 1994's Gleason 5 has become 2009's Gleason 6 or even 7)
 
So, what's my point?...Nothing I guess...certainly nothing that 95% of you have not already concluded...Maybe it's just that there's got to be a better way to make such an important decision...especially when this will directly touch so many of us eventually.  I think I'm gonna go to the garage and see if I can find that Magic 8 Ball I had as a kid.  It could come in handy.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 3/27/2009 8:29 PM (GMT -6)   
Hello and welcome here, Riverbend, and for coming out of the shadows of lurking, lol. Use to live in a community in central Florida called Riverbend when I was in high school.

Your questions and concerns are all normal and legit. I am convinced the post about a downscaling of the gleason from a 6 to a 3 was a mistake or a typo. Even a Gleason 5, is rarely ever diagnosed.

Some of the great PSA/Overtreatment debate here and in the media is very subjective in nature. You will have to determine what you can or can't live with, God forbid, you end up with a PCa diagnosis. I am hoping that you won't, and hopefully the biopsy will settle that for you.

While there are a few cases of downsizing so to speak of Gleason scores after surgery, its more the exception than the rule. On the other hand, upgrading is more common. With some men, its the same after surgery as it was detected in their biopsy. Every case is different, every guy is different.

The argument about "over treatment" or too much testing becomes a very mute subject when one gets diagnosed with an agressive case of PCa. Then the subject at hand doesn't tend to think in terms of being overtreated, he ends up wanting to be treated, wanting to be free of the curse of Cancer in his body. Including my case of PCa, I have been through 3 other serious bouts of cancer since I turned 45 years old, so I am speaking first hand.

At your age, your PSA could easily be the results of some non-cancerous event in your prostate. You didn't say if PC ran in your family at all.

I started getting my PSA checked at age 50 because that is what I was told by my GP to do. There has never been a known case in my family. My GP was using the tried and true standard of 4.0 before suggesting a biopsy. I wish now, in hindsight, that I had my first biopsy at age 50 after my first PSA, because it was already high for my age, and it kept going up year after year, until it almost tripled from age 55 to age 56 when the 3rd biopsy diagnosed the PCa.

My advice is to take the biopsy in stride, and as my old boss would say, it is what it is. Again, I hope and pray that your's comes up clean. This is one club you really don't want to be a member of, but you are certainly welcome here, and glad you are among us. Good luck to you.

David in SC


Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/27/2009 9:23 PM (GMT -6)   

Hi River, My husband has similiar stats - and to find out that only 1 x small 5% of one core in the 12 core biopsy was positive was such a shock. However the information gained from the biopsy (although yes being small, it could have been missed but just so happened it wasn't missed),  confirmed one small intermediate tumor of Gleeson 4 + 3 = 7. We waited 4 months and made a decision for treatment,  after accessing 3 specialists, lots of opinions, and exhaustive reading.  The information was at times completely overwhelming, but my husband and I believe our choice to treat it was correct for us,  and I completely disagree with some comments emphasising the over-testing issue. If one man can be saved, that's enough for me - and the one man saved by early detection in our case was mine! We would have been in a dilemma too however, if these issues of over treatment had been raised at the same time as our decisions, but we had already heard them all before, tossed around ideas together over many months, and made our own decision. Once a biopsy is carried out, you can also get the slides assessed elsewhere if you wish. When my hubby had his surgery there was another smaller lesion which had not been detected at biopsy (total of 2 small tumors),  and the overall Gleeson was slightly downgraded to 3 + 4 = 7. Although the tumors were contained, and we considered all apects including watching and waiting, we have not regreted the decision to treat it promptly and aggressively.  We made our decision on the basis of the 7 Gleeson score, and 3 specialist opinions,  as well as several expert nursing opinions, and our own reading here.  The most important factor for us was the age (49 at the time), and the fact that our (then 6 year old) son and adult kids needed us both around, and we were not prepared to take any risks, once a cancer had been found. One way or the other, the biopsy will give you some further information to make a decision which is right for you. My husband would say all this if he could type but he's not a compter person so he can't!  Good luck & hope this helps a little.  We sincerely hope it is clear for you.


Creed_three
Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery (< 0.1) specifically,  
June 2007: 0.01; Oct 2007: 0.02; April 2008: 0.02: October 2008: 0.03: November, 2008 (repeat PSA with instructions to lab to calibrate carefully) = 0.02.
 


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 372
   Posted 3/27/2009 10:53 PM (GMT -6)   
Well, I hope you never join this club of ours, but welcome to it if you do! As you have so eloquently stated prostate ca is a very strange disease in that the prognosis, treatments and outcomes seem to vary widely which they do. Because of that, a lot of us here do a lot of second guessing, especially when our outcomes aren't what we had hoped they be. If only I did the radiation instead of the surgery, or maybe I should have done nothing at all and had repeat PSA's and biopsies and nothing would have progresssed, no incontinence, no ED! However this is the state of medicine regarding prostate ca in 2009. I'm afraid that's just the way it is with this disease. Take your time sifting through all this stuff here, this forum provides you more info than you could ever find even in a doctor's office regarding your options. I looked at all my options the 3 months from first biopsy "suspicous" for cancer but not diagnostic to the second biopsy "cancer in 2/12 cores" and decided what I would do. 6 months out I am not happy with the results that I have had, but I still would repeat what I did given family history and personal preferences..........
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive for Prostate Cancer on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 3+3=6 both cores,
Clinical Stage T1C
 
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery,
No signs of spread, organ contained,
First post-op PSA=.01 on 10/15/08,
Second post-op PSA <.01 on 01/15/09,
Incontinence gone in early December '08,
ED remains, using daily Viagra and 2x/wk bimix/trimix injections for penile rehab


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/28/2009 3:58 AM (GMT -6)   
Seems to remind me of words like: The Twlight Zone and Limbo Land and Its a Jungle in PCa Land

The only 'Fact' we can ascertain is that alot of money and 'cash in' on us patients has been going on, especially since the debut of the 'new and improved' hormone drugs and expensive scanning devices that are not worthy enough. Alot of patients are rushed into making critical decisions of one type or another and some of that if fueled by greed and a system that prefers money results over human results. Some of this rush and expenses are justified and needed, some are pure b.s. and not in the patients best total interests at a given time frame, etc.

Some people do have to rush or consider something soon, too. It is also the Bizzaro Land and talk about exceptions and non-defintives!! (defies logic most of the time)
 


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 3/28/2009 9:15 PM (GMT -6)   

I would agree with all the comments from the standpoint of keeping your sense of humor, and also that there is a lot of so-called debating over some matters.  But, I think in reading this forum you will see consistent patterns among most who are or have dealt with PC.  I certainly hope you do not have PC, but you are undoubtedly doing the right thing in having a biopsy.  I would also say that it is rare (even though it has happened) for the biopsy to miss existing cancer.  If the biopsy shows cancer than you systematically determine the next course of action.  Whatever lies ahead on this, it appears you are actively involved - taking the right steps and if PC does show up, you are on top of it with the prospect of catching it early.  I don't think you can logically do anything else right now.

If I were you I would not pay a lot of attention to the rare exceptions dialogue, and not get ahead of yourself on thinking the worst.  Don't get me wrong, I certainly empathize with your anxiety, but you won't accomplish anything by worrying.  The people that should be worrying are those who never get checked until it is too late.  Blessings!


RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 3/29/2009 7:29 AM (GMT -6)   
As far as missing the PCa with the biopsy, remember most glands are about the size of a walnut. 12 cores spaced out as evenly as possible will cover most of the areas. I guess a very small ammout of PCa could be missed.
There is no looking back in this deal. We always second gess our decisions when things don't go "text book" but at this point in my "journey" I never think of the PCa comming back. I am fine with using a womens panty liner to catch a few drips. I understand in a number of years I may have to have my AUS replaced requiring one or two additional surgeries. But, over all.... I can LIVE with those things.
Good Luck,
KW
    43 at Dx and Surgery (RRP)
    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.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.
    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 3/29/2009 6:55 PM (GMT -6)   
Dear River, This is a great place to vent, to learn and to ultimately decide and return to tell us your plans, and then to go on to be free of the worry and the fear
So many have been in your shoes, you can feel like family here. Gain strength and power from the many who have gone before you, and face the doctors with grace and knowledge. You will overcome the fear, the cancer, and the worry. .....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and 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 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4203
   Posted 3/29/2009 7:37 PM (GMT -6)   
River,
You are absolutly right to be concerned with the probablilities of dectecting then curing PC. It's a crap shoot that in the end boils down to a personal decision on what you want to do. I had about 140 biopsy cores taken before they found cancer, this is unique, but it happened. It gets even worse when you review all the data on treatment options and discover that cure rates are all the same and the side affects are all bad, and this is when everything goes right; if there are complications things really get nasty.
It's frustrating, there has to be a better way.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

JohnT


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/29/2009 8:59 PM (GMT -6)   
Hi riverbend,
Welcome to HealingWell. I hope you never test positive for this disease. But if you do, take it slowly. I really appreciate your proactive approach by coming to a forum like this before diagnosis. We have a few guys doing the same and all I can say is good move. There is a lot of stuff floating around about this disease that gives none of us a comfort level. I was 44 when I was diagnosed with advanced cancer. Great. And someone wants to throw studies and reports showing me ten year results? It doesn't do anything for a guy with 39 year life expectancy, does it? The facts are not easy to sift through but I do believe that a positive mindset and a proactive approach is the best way to go. Should you join this club, keep up the research and make careful decisions. Again welcome. And please stay healthy!

Peace,


Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 3/30/2009 4:54 AM (GMT -6)   
Riverbend:

I was told I had an 80% chance of having a negative biopsy (you can see why I'm not a professional gambler). So you have that in your favor. A business associate called me not long after I was diagnosed. He was almost hysterical with the thought that he might have cancer. I've always been rather calm and pragmatic about the whole thing, but I popped positive, and he turned out to be clean. So - you never know.

And as somebody else said somewhere on this board, almost everything about this disease is gray. There is very little black and white. Sorry about that, but that just seems to be the way it is. Just move down the path, make one decision at a time - as they are required, and don't get too worked up about what might be. Just focus on what is.

I wish you all the best,
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 3/30/2009 9:11 AM (GMT -6)   
riverbend
 
Have you had a fPSA test?

sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 3/30/2009 12:41 PM (GMT -6)   
Welcome riverbend

Good luck on the biopsy pathology. Hope you don't have to join us but we will be here if you do.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA 2-17-09   0.00


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 3/30/2009 12:44 PM (GMT -6)   
Regarding the free PSA test....I asked my Uro about it and he said he did not recommend it for people with low PSA scores....his reasoning was that taking a percentage of a low number such as "3" is less telling than taking a free PSA % of a larger PSA number (say "8" or "10")... It makes sense, I guess, but still a bit odd. I have seen people here with similar PSA scores that had the free PSA test. So I suppose if you tell me that 33% of people are left-handed and you base that stat on a universe of 3 people it carries less weight than if you tell me 33% of people are left-handed and you based that % on 100 people. I'm just gonna go and grit my teeth on Wednesday and see what happens.

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 3/30/2009 1:45 PM (GMT -6)   

River,

I had originally asked my Uro and PA what about doing a PSA Free before Biopsy.

They stated they did not do the Free test since no matter what the result came back as, due to the PSA Velocity they had seen for me they were going to need a Biopsy anyways.  So it might be a nice data point but a waste of time and money.  I will have to say my Uro's office is fairly frugal with the testing -  no MRIs, X-rays or bone scans as a matter of course (or CYA policies) (at least not for me with only one core positive).   Not to mention booting me out of the hospital after only one day (for open surgery even).   All ok with me!  

jim

 


Age 58, 192lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed 140+ cc (110 grams post op) prostate size.
open RP surgery 02/03/09, Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report - All margins clear - No Invasive spread - no change in Gleason score.
2/18/09 Cath out, passed a STONE within hours. To be analyzed by doc.
Using pump (encore) daily since catheter out -- Viagra and Levitra samples now and then (no effect).
03/06/09 Started Levitra 20mg rehabbing -> 3/23 no real effect yet.
03/20/09 First post-PSA blood drawn -> 04/01 will be meeting w/PA.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 3/30/2009 2:33 PM (GMT -6)   
Jim, just one day in the hospital for an open surgery? That sounds like cruel and unusual punishment, I needed every minute of my 4 days. Looks like we are about the same age at surgery too, but I guess we are all different. My insurance paid for 4 days and my dr. wanted to make sure that I used all of it, he wanted me to stay a 5th, but the insurance said no unless I paid, which I couldn't. Why was yours one day? Doctor's choice, your choice, or insurance reasons?

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 

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