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I feel like they are not saying things we need to know: rising PSA

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Posted 8/19/2012 2:36 AM (GMT 0)
My husband was diagnosed with PC in 2005. 10 of 12 cores malignant. 10%, 70%, 40%, 50%, 30%, 100% 60%, 100% and 90%.
Gleason varied from a 9 (VA), 8 from Johns Hopkins.
Treated at the VA in Palo Alto with hormones, external beam radiation (at Stanford) and then a study involving chemo run by Stanford.
His PSA results:
6-2005 6.5
2-2006 .03
11-2006 .02
2-2007 .03
6-2007 .05
2-2008 .1
6-2008 .1
12-2008 .2
6-2009 .2
12-2009 .3
6-2010 .32
12-2010 .42
6-2011 .44
2-2012 .42
8-2012 .84

They have not done any digital exam since treatment. They didn't say he was in remission. They said he "will probably die from something else" (2010). We are seeing a private doctor in a week, since I think they are not saying his cancer is active. Am I crazy, or does it seem likely?
Posted 8/19/2012 2:41 AM (GMT 0)
your husband is clearly experiencing BCR, imo.

ed

 

Posted 8/19/2012 2:42 AM (GMT 0)
How old is your hubby?

As for how to characterize his prostate cancer - with a rising PSA would not be in remission - but that last 0.84 could be a fluke.

My medical team does not base anything on one PSA result.

HUGS!

Bud
Posted 8/19/2012 2:49 AM (GMT 0)
He is 67. I really feel the VA has had a vested interest in not saying they are "watching and waiting". And I'm pissed at myself for not asking the right questions. You just so want to believe it is over and done.
Posted 8/19/2012 11:18 AM (GMT 0)
Not sure why you are saying the VA has a vested interest, I'm under the VA Hospital Care here in DC and so far they have been very upfront.

Still you need peace of mind so if going to a outside doctor provides that - So be it.

A aside - if your hubby was in Nam - he may qualify for VA Disability.

HUGS!!

Bud
Posted 8/19/2012 11:54 AM (GMT 0)
Thanks. His care at the VA has been outstanding. No qualms about that. What I meant was that they didn't tell him he qualified for disability when this all started. And they haven't said he is entitled to disability if the cancer has recurred. Looking back at what they have said, they seem to have sort of danced around his status. They replaced his knee that was destroyed in Nam. 40 years of not bending, and he can ride a bike now. Excellent care all around.
Posted 8/19/2012 12:09 PM (GMT 0)
Welcome to HW.

Sorry for your distress. This disease has a way of doing that to us.

There is a general feeling amongst many guys on here that we never really are free of prostate cancer. Even the term remission implies that the cancer is inactive, not gone.

So, about all we can do is enjoy the good years we have, keep an eye on it, and be ready to act when we see a problem.

Your husband has many good years left. Chemo, or Hormone Therapy can keep his PSA in check for long periods of time, but it most likely will not eradicate it.

Good luck as you enter the next phase of your journey. Probably being pissed will not help you as you cope with what is to come. Hopefully you can get some assistance from the VA for the future.
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