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Posted 7/9/2011 10:45 PM (GMT -5)
A close friend has been leaning on me a bit about Pca, and is hounding me to do more sooner.

Short story - a male relative had an open surgery, followed by RT, and had an "undetectable" PSA  ever since. Period, up to the last day. He went to his GP after walking the dog, and having doubled up in gut pain part way through the morning routine. He was eight years out from treatment, and was not even thinking Pca. "Test" went to "scan" went to "CT". He had "spots" on his liver and kidney. A biopsy on one of the organs (it was said which, but I missed it) came back positive for Pca. He was given a year if he did nothing, maybe a few months more with chemo. He died five weeks later, with an "undetectable" PSA during that time.

Needless to say, I have some folks checking on me every morning.

What am I trying to say? They taught me to sleep with one eye open in some warfare schools I won't discuss. The lesson is real in more situations than my instructors could have imagined.

Posted 7/10/2011 1:58 AM (GMT -5)
WOW ! I did not know you could die from PCa, with an undetectable PSA.
Not sure I want to thank-you for sharing, this one.
Cheers Kev.
Posted 7/10/2011 4:15 AM (GMT -5)
Is there an echo in this room?!?!?!?

My friend (74) is three years out from radiation treatment for pc...Was doing well till CTscan found spots on liver and pancreas last week... Sister died from liver cancer few years ago... Apparently my friend has Pancreatic cancer.

Really sad part is that his dad just passed away at age 99 and is mom is still alive at age 97... She's in a home and probably won't know it when friend stops coming by... Us friends will have to pick up that slack.

Posted 7/10/2011 7:29 AM (GMT -5)
PCa, as do most cancers, continues to mutate over time. The more they mutate the less PSA the cells give off and they can get to the point that they can't be identified as PCa. Thus, it is not unusual for a person to have undetectible PSA, yet be riddled with PCa. When first detected a Gleason 6 will give off about three times the PSA of a Gleason 9 or 10. Thus, at some point the PSA test is no longer usefull.

My oncologist has explained that even as my PSA contiues to be undetected, he will perform various tests and scans to look for evidence of PCa. He says that once we have significant symptoms, today's treatments have relatively limited effect.

I think the true cure is very rare, however, most of us will have symptom free remission for a very long time as long as we continue to dilligently manage it. Think of all the other common cancers that have very low five year survival rates inspite iof very agressive treatment. Compare that to our nearly 100% five year and over 90% ten year survival rates for PCa. My wife likens it to being diabetic. Daily management will improve the survival and one can never turn their back on it no matter what the doctor says.
Posted 7/10/2011 8:09 AM (GMT -5)
Well that's just disturbing... shocked    Bad enough to worry about PSAs every three months but now to learn that isn't necessarily reliable information... makes sense about the cell mutation but dang...is there no relief to the worrying?  I've been trying to do the denial thing lately, other than a once a day trip to HW to keep up, but still trying to adjust to my "new normal" I suppose... 
Posted 7/10/2011 10:14 AM (GMT -5)
Oh Crap!
Posted 7/10/2011 10:22 AM (GMT -5)
If you can get out of bed in the morning and enjoy breakfast, then you just better make the most out of that day because you never know if you are going to get another one...
Posted 7/10/2011 10:44 AM (GMT -5)
There are very dangerous PC varients that give off very little or no psa. These can be identified early by an expert pathologist. They can also be identified by matching the tumor volume to the psa output and investigating futher if they don't match. Unfortunatly most doctor fail to do this. Fortunately these are also rare, but unfortunately are usually deadly regardless of treatment.
Posted 7/10/2011 11:32 AM (GMT -5)
more secondhand (thirdhand?)  horror stories.  i'll see if i can dig up a few to share with the forum later.

ed

 

Posted 7/10/2011 11:48 AM (GMT -5)
Ed,

Not trying to drag up horror stories - this is from a friend (also a cancer survivor and medical professional) I know very well, so the situation is related as first-hand.

All,

I think this is just another very real example of optimistic doctors, and patients who want it to be over so badly that they ignore warning signs (if there are any).

 

Posted 7/10/2011 12:24 PM (GMT -5)
Hi 142. My condolences on the passing of your friend. I no longer feel so snug about my almost 3 years of <.04`s. This disease sucks in so many ways. I just hope that this story is very rare and should not be of any concern for the vast majority     of the PC patients. Hope you`re doing well. Mag
Posted 7/10/2011 1:00 PM (GMT -5)
Mag,

I think that you are correct - these cases are few, but they are out there, and they should remind us to be vigilant. But then if I trusted everyone to stop at a red light, I would have been dead long ago.

I saw a book recently, self-published, by a gentleman who was actually relieved that he "finally" was diagnosed with PCa, and had surgery. So now he is "cured". That "its done and over with" attitude doesn't apply here, as I see it.

Thank you for your concern. My PSA is rising, so it looks like more scans and HT are on the September horizon.

Posted 7/10/2011 1:26 PM (GMT -5)
Thank you for sharing that sad story, it is good to be aware that something like that is really possible. Info is always good!!! I am so sorry for the loss of your friend, I send you and your family my prayer.
Posted 7/10/2011 1:42 PM (GMT -5)
How about a first hand story? My mets are killing me and my PSA has been undetectable for several years. PSA at Dx was 33, underwent IMRT external beam, HDR brachy and then HT and PSA dropped to undetectable and has remained there. Every time one of you guys celebrates with an undetectable PSA I'm torn between telling my story yet again and ruining your celebration.
Posted 7/10/2011 1:48 PM (GMT -5)
Gordy,
Just by being here your story does touch us. Not a day goes by that I don't think of you and your challenges. And when I am in front of our group I remind them that PSA is only one monitor point and it has limitations. I would mention that I know a guy that has recurrent PCa with no recurrent PSA. Interestingly, i also know another. He has no PSA but his PAP tests are another story.

Stay well, Les...

Tony
Posted 7/10/2011 1:54 PM (GMT -5)
Thanks Tony. My docs here in NJ and at M.D.Anderson follow my CEA readings in place of PSA.
Posted 7/10/2011 1:55 PM (GMT -5)
Gordy,

I think that the truth of what happens to those who are not in the "98%" is something most guys don't want to hear, but if they don't listen, well...

I had the same thoughts when my PSA started back up. It was days before I could read a "great news" post without looking back at my celebrations along the way, and wondering what I might have done differently.

I don't have a problem saying "good news" when a PSA comes back undetectable, but as you already have, I am learning that as in diagnosis, PSA after treatment is only one part of the puzzle. I often wonder if that "0" PSA isn't lulling the patient into a false comfort zone.

Posted 7/10/2011 3:04 PM (GMT -5)
142-

"I think that the truth of what happens to those who are not in the "98%" is something most guys don't want to hear, but if they don't listen, well..."

I guess "There are none so blind as those who will not see" rings true.



















Posted 7/10/2011 4:00 PM (GMT -5)
I'm pretty sure this cancer will beat me up bad some day. Right now I'm doing what I can to deal with it and or fight it. It's never "out" of my daily thinking routine!!!
Posted 7/10/2011 4:08 PM (GMT -5)
This thread certainly gives new meaning to the "Zero Club"...!!!! idea
Posted 7/10/2011 8:05 PM (GMT -5)
I have never had a zero yet, not once in nearly 4 years,was hoping, but looks like it will never happen.

Mal
Posted 7/10/2011 8:06 PM (GMT -5)
142,

Sorry about your friend.

Let me get this straight...there is something called a PSA that can check for PC. I am unaware of this marker. Please speak more of this. (My attempt at sarcasm because I found out the hard way that it isn't very reliable...at least for my version of the disease).

Hang in there everyone and enjoy whatever time we have. PC or not -- nobody knows how much time we have.
Posted 7/10/2011 8:08 PM (GMT -5)
One lesson that can be learned from this is that prostate cancer is a protean, subtle, complex disease. With my statistics, I am confident that I have beaten this disease, but am never smugly complacent about it.

P.S. I think about you often, too, Gordy. Take care and hang in there.
Posted 7/10/2011 11:39 PM (GMT -5)
Hi again 142,

It is quite true when you said:

"I guess "There are none so blind as those who will not see" rings true."

But what else can we do except keep on checking our PSA? If that doesn't work  then what additional test(s) can be done to find out if we have pc?

Anyway I'm just hoping that a low PSA is an indicator of my pc status.

Wishing you all the best in your battle.

Mag


 

Posted 7/11/2011 2:19 AM (GMT -5)
Gordy,

What are CEA tests? Is Provenge or one of the other immutherapy trials an option for you? And have you gone down the Aberiterone road? I guess that would be called Abby road..I'm sure somebody already used that phrase on this board already. Just seeing what strategies exist for us low PSA, challenging cases.
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