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Possible BCR after 8 years

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Posted 8/23/2018 1:01 AM (GMT 0)
Have been checking the forums several times a year but have not posted for several years.

Had prostate cancer surgery 8 years ago with psa above 20 and gleason 4x4. Surgery was done at mayo clinic in scottdale az.

At my annual physicals for the last 8 years the psa has been <.064. The psa level this time came back at .12, nearly exactly double the last reading. Was a bit of a shock but not totally unexpected.

Doctor is sending me for another retest at another office to see if there might be a machine error. Would be good to hear but not very hopeful about the outcome.

This brings up the great "what next" question if there is no machine error. Would this level of psa indicate possible BCR?

If so, fairly close to MD Anderson in Gilbert Az. which will accept my insurance.

Would appreciate any thoughts on this. Had just about put the PC out of my mind but this brings it back front and center.

Thanks
Posted 8/23/2018 1:07 AM (GMT 0)
If confirmed, then it sounds like you need to put a call into MD Anderson for an SRT evaluation. Because yes, you'll be in BCR range then.

Hang in there and let us know what the retest shows.

Andrew
Posted 8/23/2018 1:41 AM (GMT 0)
It happens. PCa has a very long tail. Thankfully for most it is a very slow tail.
Posted 8/23/2018 2:02 AM (GMT 0)
8 years. I feel for you brother. As Andrew said, looks like you’re in BCR territory. Officially it’s .2 but that’s an arbitrary number and it seems many oncs don’t use that number any longer.
It’s good though that it took that long.
And it’s good that you’ve got access to MDA. Stick around, keep us posted. Good luck on the next test.
Posted 8/25/2018 8:08 PM (GMT 0)
Hopefully a retest will be in your favor. I recently had a triple that coincided with a re-calibration of their machines. Fortunately after that triple, it did not increase anymore on the next test and then even went down a bit. Which, no more increase, seemed odd considering that huge jump in 3 months. Point being, the machines can mess with you. So good luck on that retest!
Posted 8/25/2018 9:12 PM (GMT 0)
I would retest ASAP and if the number is confirmed I would get with an RO that would administer a shot of Firmagon while scheduling SRT. you don't have the luxury of further tests or speculation. at least that's the way I see it.

good luck man.
Posted 9/3/2018 3:18 AM (GMT 0)
Quick up date and a question.

After psa moved from <.064 to .12 I made an appointment with a local urogulest. Very nice doctor, looked to be pretty young. Said that was not yet considered BCR as it had not reached .2. He suggested retaking the psa in three months to establish a doubling time. Also said that if trend continues would suggest radiation but not ADT.

I contacted Banner MD Anderson in Gilbert AZ and now have an appointment on September the 18th. The provider as they called him is Dr. Fade Mahmoud. I know nothing about any of the providers at this cancer center. If any one has any information about the doctors there would be appreciated.

I have another question concerning the different standards used for psa results. My primary care doctor has stated over the years that the psa test is not needed. Have had several sessions with him trying to convince him other wise concerning this. The lab that they use has a <.064 as their standard. I have noticed in reading through the other posts on this site that some suggest starting treatment at .02 or .05. Am I correct in thinking that by the lab having the <.064 standard my cancer could have been progressing for a while and could have been treated earlier?

Thanks for any suggestions
Posted 9/3/2018 3:33 AM (GMT 0)
You need a cancer specialist not your gp dealing with your cancer. Period. Keep the two politely separate.

Since you had surgery and your PSA is increasing, it means only one thing. The question is what do you do and when do you do it? Is it still local and can be cured with salvage radiation? Or is it systemic? That is now the job for your docs to determine. That you were very high risk to begin with, more aggressive treatment may be needed.
Posted 9/3/2018 6:58 AM (GMT 0)
twotall -- man you need to see someone with a greater sense of urgency. imo, you are racing against the clock and these guys want to fart around.
Posted 9/3/2018 2:26 PM (GMT 0)
twotall --
You need to move on to doctors who are more up to date and have specialized knowledge of recurrent prostate cancer. I've had PCa for 16 years now and over that time standards and treatments have changed a lot. Eight years ago I waited for salvage radiation until my PSA hit .2 which was standard at the time. By the time the treatments started a couple of months later my PSA had jumped to .4. Since then it has become more widely accepted to start treatment at lower PSA numbers. But many, maybe most, primary care doctors and urologists still adhere to .2 because that is what they know and what they have always done. I moved my treatment do Dana Farber nearly 2 years ago when my PSA began rising again indicating failed salvage radiation. When I told my primary care doctor a few months ago that I am now on Degeralex (Firmagon) he didn't know what it was, even though it has been around for a decade or more. You need to get yourself to MD Anderson or a similar leading medical center where the doctors are tuned in to current medical knowledge.
Jim
Posted 9/3/2018 3:14 PM (GMT 0)
Thank you very much for your insights.

Having followed this site for a number of years know that sooner is better. I just don't know how to speed things up. I had contacted MD Anderson a couple of days before the appointment with the local urologist as I figured it might take a while to get an appointment. After I explained the situation to MD Anderson they requested my medical records. Two days later I was scheduled for an appointment on September 18.

I would like to be seen sooner but not sure how to speed things up at this point. Have been wound up like a clock and not sleeping much. 15 days and counting.
Posted 9/3/2018 3:46 PM (GMT 0)
Sept 18 is perfectly fine.What would be too long would be taking the uro's advice to wait three months for another PSA before deciding on next steps. Best of luck at MDA.
Jim
Posted 9/3/2018 3:53 PM (GMT 0)
Agree, an appointment tomorrow or Sept 18th, which is only 2 weeks way, is the same thing, it’s likely not additional risk.
Easy for us to say try to relax, so I’ll just say, in two weeks you’ll be in the hands of one of the finest group of Doctors on the planet for this disease. Try to focus on that
Posted 9/3/2018 4:14 PM (GMT 0)
good luck twotall. sorry if I've added to your anxiety but I've been a here a few years and have seen too much I guess. best to you!
Posted 9/3/2018 8:29 PM (GMT 0)
No problem F8, I tend to do way to much research then worry about everything. I am with you concerning attacking the problem, just not sure how to get things moving faster.

It took several months before I had surgery at Mayo in Scottsdale so am glad to get into Anderson in a couple of weeks.

Have been informed by wife I need to be around at least until our 50th anniversary which is 7.5 years from now. Told her will have to see what MD Anderson has to say and adjust plans from there.

Thank for everyone's valued input
Posted 9/4/2018 12:21 AM (GMT 0)
.12 is very small and you have no idea that it is even cancer...do yourself a flavor...this time listen to the young urologist...I mean you listened to them for 8 years with pretty good results...now a glitch comes along and you want to run with the bulls...relax just wait 3 mos...read things from folks who know their business...the advice you have gotten all falls in the same park of" gosh I don't know what to tell em...but I do want to support him...ummm…its called group think it rampant Im supporting you by posting this...you may not like what I say but if Im right(im not saying I am...but I think kits worth a ashot you save a whole lot grief...if not you will not drop dead on the spot...you will simply get treatment to take care of it...caveat emptor
Posted 9/4/2018 1:02 AM (GMT 0)
logo, your opinion is as valid as mine, but no more so. No groupthink here, but I do have direct experience and a marginally competent grasp of statistics. I'm no doctor, nor are you. I stand behind my recommendation. Nothing personal, but I disagree.
Jim
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