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Can Gleason 9 folks ever be a real member of the zero club?

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Posted 2/8/2012 6:34 PM (GMT 0)
Technically I am a member of the Zero Club. My PSA is < .01 now that I've had adjuvant RT and HT. So while I'm on my HT "vacation," it is incredibly unlikely that my PSA will become detectable. But in six months when the HT stops, all bets are off.

I can hope, of course. But I am sure I will never consider myself a true member of the club. No matter how long I see "undetectable" results, I know that my PSA did start to rise after surgery, and there is a 60 percent chance it will come back. In fact, the more I read about radiation resistance and androgen independence, especially with aggressive PCa, the less confidence I have that the radiation + HT will give my cancer a knockout punch.

I don't mean to disparage others who find meaning in being a member of the club. To me, however, the club door always revolves to the outside. I'll listen to the joyous music and happy voices reverberating through the walls, raise a toast from the outside, and wish you all the best.

Nellie
Posted 2/8/2012 6:47 PM (GMT 0)
Absolutely. There's a very good chance that you won't see a relapse.

Stay positive and take care of yourself.

Tony
Posted 2/8/2012 7:01 PM (GMT 0)
Hang in there! I have worked my tail off to remain a permanent member after my HT is done .. even though I am G9 (5+4). I look forward to hanging with other G9 zero club members!
Posted 2/8/2012 7:46 PM (GMT 0)
if you are pulling <.10, your membership is good. if you should rise, as soon as you are back to <.10, back in again, don't even have to pay renewal fees.

don't feel bad, i am a gleason 7, haven't been back in the club since February of last year, and seems unlikely that I will ever be back in, with a current PSA after failed SRT at 14.0 as of December.

david in sc
Posted 2/8/2012 9:08 PM (GMT 0)
As far as I am concerned Gleason 9 boys, are executive members of the club and should have prime position at the bar. Gleason 9 boys get to sit on the stools, all other members can stand.

Cheers Kev
Posted 2/8/2012 9:17 PM (GMT 0)
Ya Gotta Think Positive...That's half the battle...Yes, G-9's all fall into the high-risk category but they certainly all don't die from prostate cancer..The longer you can test at zero, the better your chances..

My "numbers" were terrible, positive margin, positive vesicle, persistent PSA (0.9) after surgery...But 14 months post treatment I'm .001, knock on wood....(no wood!)

I remember my original Urologist telling me, when I pressed him, that there was a 90% chance I would be cancer-free at 5 years and a 50% chance at 10 years....

So that's the hand I was dealt and that's the hand I have to play.....Same as all of us...You play the hand you are dealt...Trying to guess who is going to win the game?? A waste of time. Nobody can do that....Maybe tomorrow they will find the magic bullet....
Posted 2/8/2012 9:25 PM (GMT 0)
I just got my PSA checked again today and am down to .4 I guess not bad when I started Gleason 9 and PSA of 94 and my clinical study Dr. told me I may never get to zero.

Still...after 6 months of HT I keep going down a little although its small...from .77, to .6, to .5, and today it was .4. At least I'm getting closer and my Docs think I'm doing good.

I was thinking of opening a 1 club..LOL
Posted 2/8/2012 9:26 PM (GMT 0)
good message Fairwind.  it's good to see you so positive after being on HT awhile.  hang in there buddy.

ed

 

Posted 2/8/2012 10:36 PM (GMT 0)
The fact that your psa reached a nadir of .01 gives you a significant survival benefit over those whose psa does not. There is an excellent chance that it will remain at zero, and if it does not then you will still have quite a while before the HT stops working.
Good luck
JT
Posted 2/9/2012 1:18 AM (GMT 0)
I haven't seen the Bylaws of the Zero Club, but I propose that once in always in.

Many of us are high risk with great uncertainty about the long run. While the statistics look good for us in the long term there is always that nagging thought of just what will happen. Membership should have privileges that are permanent.

The positive view that many espouse regardless of the numbers is what keeps many going. One of the best is Radad "Its only a number". I totally agree that this battle is far more mental than physical.
Posted 2/9/2012 2:13 AM (GMT 0)
I'm in the same boat as you are Nellie, but a G8. Still ringing up zeros 6 months post SRT/HT. I was also told that chance of recurrence was greater than 50%. So I am feeling pretty good right now. Hoping for the best, but planning for the worst.
Posted 2/9/2012 2:18 AM (GMT 0)
Nellie, I am a gleason 4+5=9 and agree with you.  It is hard to stay positive when we know that eventually,  we are probably going to be hormone resistant down the road and from there who knows what is going to happen. I don't like to sound negative but I consider myself a realist and it is what it is.   The Old Sailor  
Posted 2/9/2012 3:41 AM (GMT 0)
Nellie:
- regardless of your gleason status - your PSA status is <0.10 so your Zero Club membership is in full swing.
- don't stand outside , come in and celebrate getting through RT and HT - a vacation is a vacation whether it is 3 days or three years.
- a revolving door can open to the outside but if you stay in long enough, it opens inside again.
- enjoy the moment - every day is a blessing - a zero is a zero regardless of whatever potential percentage can be conjured up down the road.
- wishing you peace and contentment.
hugs,
Bronson
Posted 2/9/2012 4:24 PM (GMT 0)
Thank you for your kind comments. We have such a great bunch of people here. I've been thinking for a couple of days through my HT-induced haze, about the best way to word how I feel.

It's not that I'm unhappy having an undetectable PSA, or can't celebrate. It's just that the notion of a Zero Club, as if membership suddenly masks reality, seems surreal to me. And I find it hurtfully exclusive of those who, for whatever reason, can't meet the criteria. If anything, this board should be about those who don't go into remission, who can't take a vacation -- who can't join the Club.

If I could truly join the club, I wouldn't. I'd go away and never come back, because I wouldn't have to.

Please forgive me for these half-formed ideas. There's something I'm feeling that I'm having trouble putting into words.

Nellie
Posted 2/9/2012 5:35 PM (GMT 0)
I'm G9, too, and have *JUST* finished some "emergency" RT (80 Gy) to keep a rapidly-expanding fossa tumor from engulfing my bladder (was having MAJOR urinary distress). I went "refractory" from HT last summer. I have also been fully "Provenged", so we will see if I *EVER* get into "the Club". My next scheduled PSA test is in a month, when the RT effects should die down to "normal". Fingers crossed!
Posted 2/9/2012 6:09 PM (GMT 0)
I think nomograms and Gleason scores serve to cause us G9's more anxiety and worry than they serve to make us feel better. In fact, we see a fair number of G7's and even some G6's encounter BCR on this site.

I have enjoyed my 3 years post RP in the Zero club, but am becoming increasingly cognizant that I may be doing the SRT thing within a few months. When it happens, it happens. Worrying about it won't change anything.

So meanwhile, I will continue the good life, and enjoy being in the Alive Club. Forget about those stupid numbers.

Goodlife
Posted 2/10/2012 11:59 AM (GMT 0)
You would.... like hearing Ralph V.'s PCa story......apparently escaped the dark side and could be a rarity among PCa patients......anyway you would need to hear it from him. Another PCa journey I like knowing about is Dr. Fred Lee himself (cryo inventor with PCa), still alive with incurable PCa and now around 30-32 yrs. mark and still works 1 day a week and very old. He escaped the grimm reaper a very long time, interesting to note his drug of choice too.
Posted 2/10/2012 2:50 PM (GMT 0)
Fairwind said:
So that's the hand I was dealt and that's the hand I have to play.....Same as all of us...You play the hand you are dealt...Trying to guess who is going to win the game?? A waste of time. Nobody can do that

Well said!

Now my input to this

Hey Look! The sun rose today! What a glorious day - I'm going to do everything I can do /today/ to enjoy my life, I'm going to do everything I can do /today/ to cause that special smile and eye sparkle my lady wife has,I'm going to do everything I can do /today/ to make myself a better man (listen to the song and watch the video in the link in my signature), I'm going to do everything I can do /today/ ..Yup you get the drift ..

When I look here - Wow thats great someone else has gotten into the zero club! Cheers! Realistically I doubt I'll ever achieve that. But I can and do rejoice and celebrate with our brothers (and their significant others).

Here with my family on HW I /will/ do whatever I can to contribute to and be a part of this awesome group of gents and ladies.

What is going to happen tomorrow? Well if the sun rises - Yup the same as today -

Hugs to all

Bud
Posted 2/10/2012 9:41 PM (GMT 0)
I'm a G8. I had my Davinci surgery in 9/2/09 and pulled .005 every 3 months until my last PSA on the 3rd anniversary which came out at .094. I'm redoing the test in 2 weeks and most likely will be doing RT. I will see what RT does for me and hold off on HT if my PSA starts to climb after RT.
Posted 2/11/2012 10:49 PM (GMT 0)
Thanks for the post. While I was on ADT3 my PSA went down to .05 or something like that. I enjoyed the zero club. A few months after I stopped therapy my PSA shot up to .71 and then over the next year went on a study decline and has remained around .56 every since. I still get checked every there months and all is well. So even though I am not a member of the zero club I am still an alumni so I consider myself one of the team.
You will do great. The PSA may go up a little but I bet it will level off and stay good for years to come.

peace to you
Dale
Posted 2/15/2012 1:24 AM (GMT 0)
Nellie,

Not sure why, but I have been thinking for a few days about your post.  I think I have come to the conclusion that you are just a nice guy.  Your compassion is for the guy that can't get into the zero club.  Kudos to that.

But in some respects, you can not dictate whether you are in the club or not.  If your PSA is <.1, you're in the club.  Sort of like having good eyes.  If you have 20-20 eyes, you are in the perfect vision club.  You can have emotions about those that have to wear glasses, but you're in the club.

To answer your original question - Yes, indeed.  I have seen several G-9s remain as members of the zero club for years.  Some for the rest of their lives...one I know on his 18th year.

So, even though you don't want to be in the club, you are.  So, enjoy it.  Respect the guys with glasses, but don't feel bad for them...just support them.

Jerry L.

 

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