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Observations...

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Posted 6/22/2009 9:11 PM (GMT 0)
As a member/moderator here for quite a while, I have seen some interesting things in prostate cancer come by me.  Here are some observations...

Highest PSA I have seen at HW?   3,200  (hi Todd)   But I have read as high as 16,000 elsewhere.  Both can tell you about it...

Lowest PSA of advanced and G10?  3.6   The patients was staged at pT3a Gleason 10.

Highest PSA of local disease? 40+ (JohnT do I have this right?)

Longest tenure of stage 4?  15 years and going strong ~ Mike Milken!  He is a Gleason 9 to boot. at HW? just shy of 11 years...

40-49 year old PCa survivors at HW?  about 50.  Average stage of them is about T3.  about half are stage 3 or 4...Yuk I'm in that catagory...So was the G10 guy above...

30-39 members here? 3.
Famous members here?  I know of 6, but it's likely more.

Members with multiple cancers?  I can recall 10. 

Lowest PSA at Dx?  0.9  (JerseyG)  The DRE was positive leading to positive biopsy.

Most second opinions? 7

Number of spammers? Well over 50....grrrr.

In my 2 and a half years here I have had the unfortunate observation of 4 members husbands who passed on.  One died of another cancer.  While this is a very low number, it still is too high.  Even still, after observing over a thousand cases here, it is a low number.  I have heard members tell countless stories of the passing of family members due to prostate cancer and that has saddened me.

Tony

 

Posted 6/22/2009 9:19 PM (GMT 0)
Hi Tony,

Those are very interesting stats that you have compiled. Some remarkable numbers there. Thanks.

Also, thanks to you for being our so competent moderator.

Happy to see that you're doing so well in your journey.

All the best to you.

Magaboo

Posted 6/22/2009 10:24 PM (GMT 0)

Tony,

Interesting stats. Yes my PSA was 40 and I hope it is local, but really won't know for a few years after all radiation stops.

JohnT

Posted 6/22/2009 10:34 PM (GMT 0)
Tony, great set of stats, actually took some comfort from your posting, though I hope not at anyone else's expense.

Thanks,

David in SC
Posted 6/22/2009 10:56 PM (GMT 0)
Tony
We greatly appreciate the contribution that our moderators provide. Thank you.
Posted 6/23/2009 12:58 AM (GMT 0)
Tony,

Great stats. What is the aproximate population of HW PCa forum?

Greg
Posted 6/23/2009 2:02 AM (GMT 0)
Greg,
I'm not sure I can answer that. There are tens' of thousands who have visited our site. I'll ask peter if he can identify the number who have actually posted in PCa.

Tony
Posted 6/23/2009 2:24 AM (GMT 0)

Hi Tony,

I loved your "Observations!"

The stats you listed were both sobering and also a testament to the value of this site.

I wish you well, my friend.

P.S. I promise you I'm not shooting for longest record for a Veteran Member not logging back into the site.  Also, I talked to "biker" today and "bluebird" today.  They're both doing well.

All the best,

Posted 6/23/2009 2:25 AM (GMT 0)
By the way, Tony.  My latest PSA in my signature is incorrect... It is 0.062, not 0.62

Barry

Posted 6/23/2009 2:27 AM (GMT 0)
Tony,

Thanks for putting some perspective on this disease we all have. It is easy to become paniced when the doctor comes in and says you have PC. It is even easier to become a little (or a lot) scared when you kiss your wife and kids goodbye as they wheel you into the OR.

Laying on these scanning tables, radiation rooms, hearing words we haven't the foggiest what they mean, all tend to raise our blood pressure, and wonder if we'll ever see our kids and grandkids get married, have babies, etc.

As your unscientific stats show, we can beat this thing, if not forever, for a long time. We have time to make informed decsions, do our homework, and keep ahead of this thing instead of behind it. We don't have to be pressured by any doctor to make a quick decision.

We need to take deep breaths, make rational, informed decsions, and head into battle, but taking time along the way to smell the roses, enjoy life, and be thankful that we don't have it as bad as other people. Just spending a couple minutes in some of the other HW forums can make us realize this isn't as bad as what we originally thought.

Thanks again for bringing us back to reality !
Posted 6/23/2009 2:49 AM (GMT 0)
Great post Tony!!!! I look forward to many of those records being broken....especially the long term survival for stage 3-4 guys. :)
Even better that you were able to stir up Barry!! It has been a long time Barry! Hope you are doing fantastic!!

Thanks for all you do and all that you are!!
Posted 6/23/2009 5:29 AM (GMT 0)

Hey Doting! tongue

Nice to "see" you again.  I'm glad to catch up on your Dad's condition via your signature.  I pray he stays in the "good zone" too.

I'm doing fine.  'Didn't like the idea that my PSA came out of undetectable today, but it's still less than 0.1, which is good!  December is my next PSA and I'm looking for a good Christmas report.

I hope the Healing Well gang is, you guessed it, healing well!

Kindest regards,

Posted 6/23/2009 5:58 AM (GMT 0)
Hi Barry,
It is very nice to see you again. I look forward to you adding that zero in your score. If I start tracking the term between posts, I'll be glad to add you. What I would take it to mean is that you are doing great... :-)

Bob, LOL, you might be that guy on the seconds, that was meant with humor...For the record, I did meet a guy with a Gleason 4 but it was at an US Too meeting. No he had not had treatment. My Us Too director, Lew Musgrove, the former President of US Too, had a Gleason 8 in 1992. He had surgery and still to date, no relapse. You can look him up. He is happy to talk about it. I believe that Milken has had some struggle with his PSA but he looked great at the Scientific Retreat for that silly little organization he founded ~ The Prostate Cancer Foundation. Again stage IV, G9 Dx in 1994...The love never left you, Bob...

Everybody thank you for the kind comments.

Tony
Posted 6/23/2009 2:18 PM (GMT 0)
Hi Tony,

Thank you.  I'm feeling good physically and really busy with work and things.

I visit biker and his sweet wife every time I go to Spokane to see family.

Thanks to you for continuing to be a leader here!

All the best,

 

Posted 6/23/2009 2:32 PM (GMT 0)
 

  thanks Tony for all you do..

Posted 7/2/2009 2:05 PM (GMT 0)
Great stuff Tony but my PSA was 0.9 at DX. A positive DRE lead to a positive biopsy.  Thanks for the info.
Posted 7/2/2009 3:41 PM (GMT 0)
Tony, Thanks for the Stats!! I see I am not alone 2 others in my age group....

Have a SAFE and HAPPY 4th!!!
Posted 7/2/2009 4:01 PM (GMT 0)
 

Great post gives us all hope and helps to know that the dreaded numbers do not tell the whole story.

Jerry1 

Posted 7/2/2009 4:13 PM (GMT 0)
Jersey,
You win the top spot there. I completely forgot about you when I transferred this over from an older post I revived. I have made the change to the post.

Sorry, SHU...If it helps, I do know of another 5 from other sites that were under 40 whne diagnosed. Like I say about my case, I would have been positive at 40, probably at 39. I was 44 and advanced already when the cores came back positive.

Tony
Posted 7/3/2009 8:15 AM (GMT 0)
Hey Tony, right on the money as usual, you do great work, was wondering how many oldies with T3 like me are on HW? and what stats you have on our group?

Regards Mal.
Posted 7/3/2009 12:34 PM (GMT 0)
Mal,
I don't know for certain. When you get to age 64 and above you have the largest population of prostate cancer survivors, and T3 is more commonly found. That said as a whole about 15% of all here, were T3 or above. It's probably higher of a percentage. It's more than one in ten. I prefer to count the upside down 67 year olds with T3 that are doing great ~ and you are doing great down there in Perth. :-)

Tony
Posted 7/4/2009 12:18 AM (GMT 0)
Extemely interesting post, Tony. Thanks for crunching the numbers for us. I'm sure that you are more appreciated than you know. Keep up the fine work.
Bob
Posted 7/4/2009 2:16 AM (GMT 0)
Thank you Tony. You and all the other moderators do a great job helping us and educating us. These stats give me hope.
Posted 7/4/2009 5:30 AM (GMT 0)
You guys are great!

I had hoped that posting this could raise some eyebrows. We have meny reasons to remain positive!

Tony
Posted 7/4/2009 6:54 AM (GMT 0)
Thanks mate you are the best yeah

Mal.
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