HealingWell
Search Close Search
☰

I know. I’m a man, not a statistic.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/29/2014 3:08 AM (GMT 0)
Do you live in fear of the numbers or live?

Life is short, I do the latter.
Posted 3/29/2014 3:14 AM (GMT 0)
Good for you and you got pretty good numbers too. Hey Im alive , I live , what else I got to do.
Posted 3/29/2014 4:05 AM (GMT 0)
iSpark...I vacillate from time to time but I'd say LIVE over NUMBERS. BTW, your numbers are of great interest to me.

Would love to hear the story of what your uro has to say about your numbers pattern.
Posted 3/29/2014 4:28 AM (GMT 0)
Live.

I fear nothing about having PC. I have bad numbers, and they are climbing. So be it. PC, or any of the other 3 cancer events I have survived and outlived do not, nor will they ever, define who I am as a man, as a person, or how I feel about myself.

I see too many defining themselves by their "numbers". Another reason, while I strongly feel, that over all, ultra-sensitive PSA testing itself, does more harm than good. Too many become obsessed over minute rises, become too number driven.

In my current PC situation, my oncologist and I do not care what the PSA number is any more, just one or two tests a year tops. It's not going to change my situation to know what it is constantly, and its not going to change any advanced treatment or non-treatment from my doctor's perspective

We are all more than the cancer. It may eventually own my body, it may even be the death of me, but it will never, ever, take my mind and soul. My mind belongs to me, and my soul belongs to God. The cancer can have my physical shell if it comes down to it, so be it.

David
Posted 3/29/2014 4:31 AM (GMT 0)
"I am not a number. I am a free man!"

/www.youtube.com/watch?v=mir45UIvPL0
Posted 3/29/2014 4:55 AM (GMT 0)
Then he grew old became a wizened old king and executed a man with the same sentiment. Im betting you know!
Posted 3/29/2014 11:38 AM (GMT 0)
Spark,

You lucky devil -- 100% Continent, now its only ED and that takes time; but with both nerve sparing you should be OK in time.

.
Posted 3/29/2014 12:48 PM (GMT 0)
Braveheart!
Posted 3/29/2014 1:32 PM (GMT 0)
I've developed a pattern of shelving it...call it denial I guess...when not having test, etc... but when it is time for blood tests or scans...I stress...call it fear, worry, anxiety...and then a plan is determined...we carry out the plan and through that process, I tend not to worry or be fearful. I seem to need to have to know I have a plan and/or I'm doing something.

I know...I'm messed up.
Posted 3/29/2014 1:57 PM (GMT 0)

Inchoation said...
Would love to hear the story of what your uro has to say about your numbers pattern.

I asked about that 3 months ago at my last visit, he thought that it was possibly a small amount of prostate tissue that was left at the bladder neck, prostate tissue on the urethra at the bladder neck that was causing the fluctuations.

Which should give me some concern I suppose, as that's where the cancer was, and the one reason they suggested I have surgery now (high moderate risk patient) and not wait, to lessen the chance of the cancer spreading into the bladder.


Anywho, it's raining outside and warm today, I haven't played in the mud puddles naked in a VERY long time. tongue
Posted 3/29/2014 5:44 PM (GMT 0)

Jerry L. said...
I've developed a pattern of shelving it...call it denial I guess...when not having test, etc... but when it is time for blood tests or scans...I stress...call it fear, worry, anxiety...and then a plan is determined...we carry out the plan and through that process, I tend not to worry or be fearful. I seem to need to have to know I have a plan and/or I'm doing something.

I know...I'm messed up.

That's pretty much me too, Jerry.

I am a metrics guys, so do not fear the blood work or scans. kind of crave them.

As Worried Guy is so fond of saying, "without data, it's just an opinion".

I shelve it too, and really only think about stage IV PCa when on these boards, which unfortunately take a lot of time, or when praying where I should be spending even more time.

Unfortunately with total loss of libido, I don't spend much time thinking of that either.

Lots of time on my hands now that the wrong teams keep winning in NCAA Tourney.

LupronJim
Posted 3/29/2014 11:15 PM (GMT 0)

iSpark said...

Inchoation said...
Would love to hear the story of what your uro has to say about your numbers pattern.

I asked about that 3 months ago at my last visit, he thought that it was possibly a small amount of prostate tissue that was left at the bladder neck, prostate tissue on the urethra at the bladder neck that was causing the fluctuations.

Which should give me some concern I suppose, as that's where the cancer was, and the one reason they suggested I have surgery now (high moderate risk patient) and not wait, to lessen the chance of the cancer spreading into the bladder.


Anywho, it's raining outside and warm today, I haven't played in the mud puddles naked in a VERY long time. tongue


Thank you for the reply... Glad to see your PSA has dropped. Had to be somewhat alarming to come back at 0.09 initially. You're one of my new heroes. May the trend be DOWNward for you!
Posted 3/30/2014 2:53 AM (GMT 0)
Actually it ticked up <0.02 from <0.04 on my last test.

Thanks. Not sure about the hero part though.
Posted 3/30/2014 2:57 AM (GMT 0)
Your phrasing of above is confusing to me. So it ticked UP <.02 FROM <.04. Can you explain that???
Posted 3/30/2014 3:27 AM (GMT 0)
On rare occasions, I wonder if I'm just drifting off in some naive wonderland. But in general, I'm living my life as if I'm cured. I realize that my (very) early stats are good and that not everyone here is so fortunate. But if I'm interpreting the question correctly, I'm choosing to go about my business until further notice. And in the event I get that further notice, I still intend to go about the business of life.

PS Nice connection F8! And nice counterpoint logo!
Posted 3/30/2014 3:33 AM (GMT 0)
We are interested in the numbers as they are helping us make informed financial plans and travel plans. This article on HT is top of mind right now as our date with statistical, prognosticative destiny is this July. But as my husband and I both say, he has always been above average.
http://www.sciencedaily.com/releases/2006/08/060823185000.htm
Posted 3/30/2014 5:40 PM (GMT 0)

logoslidat said...
Your phrasing of above is confusing to me. So it ticked UP <.02 FROM <.04. Can you explain that???

I should have just used .02. whoops.
Posted 3/30/2014 7:57 PM (GMT 0)
iSpark,

I see this in your sig:

5-24-13 <0.09
9-23-13 <0.04
1-6-14 <0.06

I think you are interpreting the results incorrectly, if the "<" is actually part of the printed report.

With the "<", those numbers tell me you either used different labs, or the lab has different sites / equipment / tests that get used as available (that is the case with some of the labs my tests are sent to - they have many regional labs, and the blood gets sent to different ones based on how busy they are).

All three tests, with the "<", mean undetectable, and the stated number is the lowest level the test reports. So you could have a solid 0.03 for three tests in a row, or something else, but always lower than what the test could see. Look at the copies of your printed lab reports. They will at least have the location of the lab, and may specify the equipment (not all do that).

You can't say that your PSA went up based on the numbers you've shown us. It might have stayed the same, or even gone down.
Posted 3/30/2014 8:05 PM (GMT 0)

142 said...
iSpark,

I see this in your sig:

5-24-13 <0.09
9-23-13 <0.04
1-6-14 <0.06

I think you are interpreting the results incorrectly, if the "<" is actually part of the printed report.

With the "<", those numbers tell me you either used different labs, or the lab has different sites / equipment / tests that get used as available (that is the case with some of the labs my tests are sent to - they have many regional labs, and the blood gets sent to different ones based on how busy they are).

All three tests, with the "<", mean undetectable, and the stated number is the lowest level the test reports. So you could have a solid 0.03 for three tests in a row, or something else, but always lower than what the test could see. Look at the copies of your printed lab reports. They will at least have the location of the lab, and may specify the equipment (not all do that).

You can't say that your PSA went up based on the numbers you've shown us. It might have stayed the same, or even gone down.

If you promise to not use my info illegally, I give you the password and login info to my online medical charts.

That's whats there, whether it's believed or not.
Posted 3/30/2014 8:14 PM (GMT 0)
Hmmm, it only shows < on the first test.

Collected: 05/23/2013 3:53 PM - CENTAUR BASELINE PSA <0.10
Collected: 06/17/2013 10:20 AM - CENTAUR BASELINE PSA 0.09
Collected: 09/23/2013 10:15 AM - CENTAUR BASELINE PSA 0.04
Collected: 01/06/2014 10:08 AM - CENTAUR BASELINE PSA 0.06

Anywho, that's the results.
Posted 3/30/2014 8:26 PM (GMT 0)
That's a whole different animal. Not a bad one, but different.

Your PSA is fluctuating. At those levels, my doc would send me out to celebrate. What you would be looking for now is a trend, such as three increases in a row. You don't have that yet. I would consider those still to be good numbers, but I'd speculate there was a change in the test requested after the first one.

Standard screening tests report down to "<0.1". Ultra-sensitives go below that. I suspect the first test was standard, the next three ultra-sensitive.
Posted 3/30/2014 8:40 PM (GMT 0)

iSpark said...
Hmmm, it only shows < on the first test.

Collected: 05/23/2013 3:53 PM - CENTAUR BASELINE PSA <0.10
Collected: 06/17/2013 10:20 AM - CENTAUR BASELINE PSA 0.09
Collected: 09/23/2013 10:15 AM - CENTAUR BASELINE PSA 0.04
Collected: 01/06/2014 10:08 AM - CENTAUR BASELINE PSA 0.06

Anywho, that's the results.

Maybe my eyes are starting to cross with all off these "less than" figures? But don't all of the above PSAs from June 13 to Jan 14 read less than 0.10, on the same machine? Then why is the 1st one stated as "less than" .1, while the following 3 also appear to be "less than .1" but are reported as numbers like "0.04" rather than simple "less than .1", which they all are?

I must be looking at this wrong. I guess 142's explanation that they switched to an US machine explains it, but they are all called "Centaur".

Post Edited (BillyBob@388) : 3/30/2014 2:44:13 PM (GMT-6)

Posted 3/30/2014 9:04 PM (GMT 0)
They may have switched to a different version of machine from the same manufacturer, gone to a different location with a different model from the same manufacturer, have multiple machines of different versions in the same facility, or the doc might have first ordered a "standard" or "screening" PSA test (I've seen the one that reports only down to "< 0.1" referred to as both those names). If he then ordered "ultra-sensitive" (or another name for it, varies by labs), the same machine could be used, but with a more precise test, where the "<" kicks in a lot lower (let's just say "<0.02" for an example).

The lab I am forced to use by the insurance company for my standard bloodwork has 30+ locations, and looking at my printed results (not the summary they put on line, the hard paper copy), I have been sent to a different one almost every time. Even Bostwick farmed out my last PSA to that same company. In times past, they did them in house.

Google tells me that Centaur seems to be the name of a family of tests that can be run on Siemens equipment. My tests are a majority Immulite test (immunoassay) on Siemens equipment.
Posted 3/30/2014 9:19 PM (GMT 0)
My lab will say <.1 if the ordered test is standard. My lab has the the results to there lowest limit, but will only reveal that, if an ultra sensitive is ordered. In other words, one blood vial, one assay, but will reveal what was ordered. Oh and you will be charged more for the ultra sensitive, even tho they have ultra sensitive revealed to them and no other testing or blood is required. I suspect a lot of labs have the same capabilities and procedure. Your uro most likely ordered std the first one, then switched to ultra fro the next 3 be cause he wanted to know,
Posted 3/30/2014 9:26 PM (GMT 0)
I'm thinking about it now.

My doctor is a professor at the Medical University of South Carolina. They have multiple locations where they see patients. I have been to two of these offices.
I'm guessing he has to use what the school provides as far as testing facilities depending on where he sees the patient.

Anywho, my first PSA, after surgery, was done at the main urology department, they use the standard test?
The next three test were done at a off campus office which uses the ultra sensitive test?

That me be the difference in the first one and the next three tests?

Which ties in to my other post today.
Confused yet?
www.healingwell.com/community/default.aspx?f=35&m=3036104

I am
✚ New Topic ✚ Reply