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Posted 6/1/2017 7:16 PM (GMT 0)
@Tall Allen - recall, the Decipher test has already been done, and the score was .37. I recall you mentioning that .40 was the cutoff for low risk. However my report, and all of the other literature I've read from the company that does the test (OncogeneDX?) Indicated that below .45 is considered low risk.
Posted 6/1/2017 8:03 PM (GMT 0)
Oh yes - I forgot. Genome Dx makes the test - they update the cutoffs as they get more data. So that should give you reasonable assurance that it isn't going anywhere very fast - a very low probability of detectable mets in the next ten years. But probabilities are one thing, and the individual case is another, so monitoring is still called for.
Posted 6/1/2017 9:15 PM (GMT 0)
Thanks for the clarification TA, i was wondering why you had .40 as the cutoff and they had .45.

While i am tempted to retest in a month, i dont think it will give me any meaningful data, and will only serve to heighten my anxiety, so my plan is 3 months, and in the interim, i will try to put this sh!t in a box, where my brain can't access it.

With that said, i contacted Zelefsky's office. The process is i need to get them all the records, which he will have by Monday, according to Tewari's office, and then he will "look at them and they'll let me know when he can see me".

This is just a guess, but ihave a feeling I'll get a call from his assistant who will say "Dr Zelefsky says to call him if it continues to rise to xx"

But who knows. I know its not time to act, in fact another member here who i emailed, also a Tewari patient, went from undetectable to .03 a few months ago, and just retested , got a result of .015. So who knows.

But i would just like to do a consult with Zelefsky if possible to get his take. Maybe its just my way of doing SOMETHING to give me a sense of control. Even though i have none.

Ok i better stop now, i'm rambling.
Like i said, I'm not in a panick. I'm just sad. Didnt expect this, and between another family member and me, our whole lives seem to be dominated by cancer, and its getting old.
Posted 6/1/2017 10:46 PM (GMT 0)
Pratoman,

Well, bummer. I am your age and monitoring my similar uPSAs so may be there with you soon. Not sure yet.

Here are some items I wanted to pass on, in no particular order.

(1) Setting aside your ".00" (different lab) results, considering the others' "<.02" lower reporting limits, and assuming you were probably getting ultra sensitive PSA tests but docs/labs were just rounding and not giving you the third digits...it is quite possible that your real PSA levels were something like: Jan. 2016 = .010, Jun. 2016 = .015, Jan. 2017 = .023, Feb. 2017 = .025, May 2017 = .033.

(2) Have been monitoring my uPSA since Nov. 2012. Quarterly at first, longer gaps later. I have all the LabCorp hard-copies. They “all” show “PSA, Ultrasensitive, W/O serial, ROCHE ECLIA methodology”. I just looked. They all showed results of “< something” – until my recent ones, of course. Up through May, 2013, it was “< 0.006”. After July, 2013, it was “< 0.015”, and has been since. I assume their uPSAs are standard machines nationwide, but cannot prove it. The “Performing Lab:” info did change, depending on which LabCorp location drew the blood.

(3) If your uPSA continues at this rate, taking into account TA's comments that you might not hit BCR for 7 or more years, and then in average case mets 9 years after that...you do realize that, IF YOU DO NOTHING ELSE, you will be about 80 years old then, right? Don't you think PCa treatments would have moved ahead a lot by then...and you have coronary issues to worry about for now. So might want to try keeping things in perspective. Believe me, I know it's hard to. Lord, is it.

(4) Do not be surprised if your uPSA comes down or bounces around. I have been monitoring mine monthly closely for months, plus a couple extra confirmatory tests where I suspected an incorrect result. All less than .030 so far. Here is my pattern so far: up, up, up, down, up, down, with the last result being the exact average of them all.

(5) Nobody would want to be the one to advise you to not talk to good MOs and then find out that delay harmed you in the long run. However, please keep in mind thoughts like Dr. Myer expressed in this short video...that irradiating benign tissue is always successful (well, duh...):

/askdrmyers.wordpress.com/2012/12/19/when-recurrent-pca-isnt-cancer/

(6) My primary care told me I was being a little paranoid about my rise. My uro, that did my surgery, post-monitoring and TRT, has not even responded about my rising lab results. But I am in a mid-size town. You have access to real experts. If you can afford the time and expense, it sure would not hurt to run your case by them for now, even if you do nothing else but retest in the near future. I just do not buy that at uPSA = .029 “come on in, the water's fine”, but at .031, I must irradiate immediately or face certain death. IMHO, there is real societal and personal wealth transfer going on in medicine these days. Some truly justified, some perhaps not so much.

Robert
Posted 6/1/2017 11:24 PM (GMT 0)
Thanks Bobbiesan. Yeah, I know tht I will possibly be over 80 by the time I havea real problem, and I'm guessing at 8- I may not care, if a heart attack doesn't get me first.

Drs office finally called me (NP). Said as far as they are concerned, it's still undetectable, and the last two readings of .02 and .033 are within the margin of error especially considering that it's two different labs.
Also said, that they do see guys have two increase in a row at these low levels, and then just level off. So according to him, no reason to panic. Just retest in 3 months. So that's what I'm gonna do.

Still gonna try to get in to Dr Zelefsky though.
Posted 6/1/2017 11:35 PM (GMT 0)

island time said...
Hey bro...I understand the disappointment. And that's all it is. It's disappointing....possibly disappointing to the point of being a real hassle at some point in our lives.

I'm convinced there's cancer in my body. There's not a "darn" thing I can do about that very real possibility (or probability).

We hope for the best and accept the worst. (sorry for the cliche'...but sometimes they're true)

You and I may be on similar paths...or not. Odds are we will not die of PCa....at least anytime soon anyway.

Enjoy what time we got left. (and that's not a depressing sentiment)

Hang in there friend.

Thanks IT, ..... time we got left..... I dunno, it sounds depressing. But it is what it is.
Posted 6/2/2017 1:58 AM (GMT 0)
"Just retest in 3 months. So that's what I'm gonna do.
Still gonna try to get in to Dr Zelefsky though"

That sounds good. That's what I would do if in your shoes. Bet he will say same as Tewari. And that will be another expert data point for you. If Zelefsky does want an earlier test (sometime before 12 weeks), say, just before you get in to see him, well, ok, then get 'er done. Or, if it is really grinding on you, split the difference, and at six weeks, get either of them to give you the LabCorp script thing, since you know how that works now (slow, but workable).

Otherwise, since your PSA is moving pretty slowly, or may even go back down some ... it just doesn't serve you well to fret a lot about it for the near term, and you avoid the possibility of over treatment from jumping the gun too fast.
Posted 6/2/2017 4:02 AM (GMT 0)
Hey Prat,

Your PSA changes are micro- moves all within a tiny range of an overall very low PSA. I know the moves are disconcerting, but I agree with Tewari's team that you are still "undetectible" and shouldn't worry.

I barely blinked an eye when mine went from 0.02 to 0.03, and as you mention above my next test was 0.017.

I suggest you try to put this out of your mind for 3 months until the next test.

Gedman
Posted 6/2/2017 9:42 AM (GMT 0)
Regarding the hip pain - it could be due to the pelvic floor muscles being too tight. I have been experiencing pain in the left hip for about the last 2 months and it appears to be muscular with tightening going down to the knee.

Hip pain due to tight pelvic floor muscles has been well described. Exercises which are "reverse" kegels can be used to relax the muscles and release the tension in the hip.
Posted 6/2/2017 11:36 AM (GMT 0)
@Gedman... that's what I'm planning to do, other than possibly seeing Zelefsky, if he'll see me. I'm thinking now, that maybe contacting his office was a bit premature and I should hold off. But I already set things in motion to get my records over to him, so I might as well just let things play out.

@Lamilla... thank you, but o don't think that's the issue, as when I do a 4 mile walk, it makes it worse, and I haven't been doing kegels regularly. I'm pretty sure it's just bursitis or something else minor
Posted 6/2/2017 2:14 PM (GMT 0)
Sorry about this turn of events, Prat -

Perhaps you're already there with optimizing nutrition and exercise. It ain't radiation, but perhaps can slow progression. Appears to be some benefit to me...or not??

If you're interested I could share more. Email in profile.

Best to you -
Wilderness.
Posted 6/2/2017 2:38 PM (GMT 0)
Prato,
Waiting is always the worst part of anything for me, so I can really relate. If your tests had been from the same lab I would have a higher level of concern, but different labs??? Definitely could be the reason for the slight bump. I'll be thinking of you and hoping for the best. Stay strong.

Tom
Posted 6/2/2017 4:50 PM (GMT 0)
Dang. A kick on the shins for sure but too soon to tell anything especially with another testing change. Seems you have had more than your share of bad luck when it comes to PSA testing. Like this whole thing isn't hard enough already.

Keep your great outlook going forward. While there are many, you are my Healing-Well hero.

Jon
Posted 6/2/2017 9:49 PM (GMT 0)
Wilderness, I emailed you

Reltnie, thnks for the response

Graytech, HW Hero? Lololol, not me bro. I'm just a scared rat in a cage like most others here. But thanks.

All good, I've calmed down considerably, and put this cr@p in the closet, till September (x waiting to hear from Zelefsky)
Posted 6/3/2017 11:56 AM (GMT 0)
"if i can only internalize what i know to be true then i can find happiness'

Spoken for truth, my friend. I think that's the case for most people. We are all, including me, good at telling others not to worry. But when emotion enters the picture, and it gets personal, well, you know the rest. No internalizing logic, at that point.
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