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jerryo

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jerryo
Regular Member
Joined : Sep 2011
Posts : 55
Posted 10/30/2018 10:34 AM (GMT -8)
As I posted last week my psa has been 0.01 for eight years,but my last test it had jumped to 2.04, My PA refused to do another PSA test as he states they are very rarely wrong. I have an appointment on the 14 th with a new Urologist, but I am wondering if indeed it has reared its ugly head what treatment options are available, also wondering how these cells can activate after 8 years? any input would be greatly appreciated, I am now 73 years old and wondering how aggressive the Dr's will be. I naturally want at least another 10 years.
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JNF
Veteran Member
Joined : Dec 2010
Posts : 5726
Posted 10/30/2018 10:40 AM (GMT -8)
Unfortunately PCa cells can go dormant for a long time and then wake up and do harm. A client of mine was undetectable for nearly 16 years after his prostate was removed and then his PSA started rising and he went on ADT.

You were high risk when dx with 10/10 cores and G9. If it is back, you will want to search for any mets and then probably begin treating with ADT, at the very least. I would be looking for a very experienced medical oncologist that does a lot of advanced stage PCa work. I think the urologist is done.
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Pratoman
Forum Moderator
Joined : Nov 2012
Posts : 9320
Posted 10/30/2018 11:05 AM (GMT -8)
Jack is right, there is no time limit. And that goes for any type of cancer. Yesterday I met a really nice older man, (for me to call someone older, you know he’s old 😂), while waiting for my radiation treatment. He was being treated for Thyroid cancer. He was diagnosed and treated 30 years ago and had been cancer free since then. Until now. At first, my reaction (to myself) was “how could that even happen?. But the answer is, “well, it’s cancer. So it’s possible.”

With that said, a jump from .01 to 2.04 seems like a bigger jump than would be expected, unless the tests were 3, 4, 5 years apart. So it makes no sense for the uro or his Pa to refuse to retest for lab error. Those kids if errors happen quite often, more often than they should.
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 10/30/2018 11:21 AM (GMT -8)
All lab tests can suffer from errors. Anything out of band should be rechecked. Your PA is wrong to not admit that.

Sadly it is also possible that some PC survived earlier treatments and is back to haunt you.

You still have treatment options so 10 more years if possible.

Andrew
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3991
Posted 10/30/2018 11:46 AM (GMT -8)
Jerry,

My MO tells me the average time to BCR for high risk guys who had RP is eight years, so you landed at the top of the curve. I unfortunately landed at X = 0.

The good news is that you still likely have a long ways to go.
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alephnull
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Joined : Dec 2013
Posts : 2452
Posted 10/30/2018 12:04 PM (GMT -8)
Tell your PA you aren't looking for accuracy, but for confirmation of recurrence. Most Oncos and or Urologists will insist on at least two consecutive rises before acting.
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jerryo
Regular Member
Joined : Sep 2011
Posts : 55
Posted 10/30/2018 2:44 PM (GMT -8)
Thanks guys for your response, for some reason I am going thru depression, crazy when I was first diagnosed never had depression, perhaps its my age catching up to me.Any way appreciate the feedback.
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RocklinSaluki
New Member
Joined : Jun 2015
Posts : 17
Posted 10/30/2018 3:06 PM (GMT -8)
I'd find a local lab and pay for the PSA test out of pocket.
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Fresh
New Member
Joined : Sep 2018
Posts : 10
Posted 10/30/2018 4:10 PM (GMT -8)
jerryo - sorry to hear this. It’s another fallacy i’m afraid, PCa doesn’t go dormant or become indolent, it’s another piece of crap that gets fed to us.

The bottom line is that when PCa is outside of the prostate - say for example lodged in the prostate bed which is a fatty fibrous environment. The PCa has to transform its environment by encouraging the body to develope a blood supply for example so that is can acquire a supply of hormone and glucose food. PCa cells send out signals that encourage that to happen so the inherent delay between no activity and PCa development is just the time lapse needed for PCa to effectively seed. Ask your oncologist if he really believes that PCa likes to take a long nap or if it’s more plausible that the time delay is merely the time taken to effectively seed. You need that second PSA test. You also need a PSMA probably Ga-68 labelled trader scan.
Fresh
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lifeguyd
Veteran Member
Joined : Jul 2006
Posts : 691
Posted 10/31/2018 7:47 AM (GMT -8)
I was surprised when 8 years after surgery my psa started to move up. It was only .2 when I started radiation therapy. My psa was never at zero, still isn't.
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Bohemond
Veteran Member
Joined : Apr 2012
Posts : 1438
Posted 10/31/2018 9:39 AM (GMT -8)

jerryo said...
wondering how these cells can activate after 8 years? any input would be greatly appreciated, I am now 73 years old and wondering how aggressive the Dr's will be. I naturally want at least another 10 years.


Jerryo,
See my signature below. I was also T3b and went 8 years from surgery to BCR and now have gone another nearly 8 years from SRT to BCR again -- even after having PSA results of 0.00 for 4 years after SRT. That's just the way this devious beast can be.

I suggest you need to find a good MO. Depending on the rate of PSA increase you may be able to postpone further treatment -- ADT -- for quite a while -- depends on the MO's judgment. When I moved my care to an MO at Dana Farber he said that given my history of long intervals of very low PSA he'd be inclined to let my PSA increase higher than if I'd had sooner or more rapid increase. Unfortunately my rate of increase began accelerating rapidly and called for treatment sooner than if it had stayed at a slow rate of increase. Best wishes.
Jim
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halbert
Veteran Member
Joined : Dec 2014
Posts : 5818
Posted 10/31/2018 10:16 AM (GMT -8)
Yeah, it's a tricky beast. It does seem to "lay low" for extended periods then suddenly show back up, some of the time. Was it slowly growing and putting out little things for a long time, or did it suddenly "wake up"? Unfortunately, with our current technologies, we don't know.

All we can do is treat the symptoms. And that, like it or not, is where medicine stops being science and becomes art.
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jerryo
Regular Member
Joined : Sep 2011
Posts : 55
Posted 10/31/2018 5:28 PM (GMT -8)
I am a little confused on the chain of command as far as the Dr's are concerned, I had to find a new Urologist as my old one will not accept my insurance, I have an appointment on the 14th of November with the new Urologist, does he order the Bone Scan and CT scan & the refer me to the Oncologist, or do I take matters into my own hands and try to secure an Oncologist on my own? We only have four oncologists in Saint George Utah, so how do you find a good one? As always your help is greatly appreciated.
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lifeguyd
Veteran Member
Joined : Jul 2006
Posts : 691
Posted 10/31/2018 6:55 PM (GMT -8)
Jerryo
You might also try to find a radiologist as your next move might be some form of radiation treatment. I was referred direct from a urologist to a a radiologist.
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 10/31/2018 8:07 PM (GMT -8)
there's no real "chain of command" except as dictated by your insurance. Sometimes, some specialist require a referral from either your PCP or another "specialist." Sometimes not.

UROs are both surgeons and knowledgeable on PC. Often being the ones to diagnose and do the first rounds of testing and treatment. At your stage the URO should be ordering the scans and blood tests. At this point an oncologist won't add much to your knowledge for PC. An MO would get involved in more advanced cases or if primary treatments failed. If you want you can talk to one - your choice. You do want to take lifeguard's suggestion and find an RO to consult with. The two primary treatments are surgery or radiation. You'll want opinions from both the URO and RO about your treatment options and then decide from there.

If you talk to a MO, you want one that specials in PC - not all do. Most guys don't move on to the MO until surgery or RT has failed.

Hope that helps.
Andrew
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