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Beginning stage of reccurence?

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Posted 12/8/2015 7:41 PM (GMT 0)
HI All,

Looks like my membership to the zero club is about to expire.
My latest psa result from yesterday was up again, now at .04
3 months ago it was at .02
Just looking for some insight on my next step.
I scheduled an appointment for next Thursday in Boston, with a radiation oncologist, with a urologic specialty.
My local here in Rhode Island says he won't act until I am at .2, not sure I agree since my psa has been trending upward. last 5 results were <.01, .01, .02, .02, .04
I want to catch the recurrence early in hope of a cure. I have never had a bone scan or MRI guided bioposy of the surrounding tissue, should I request those now?

any help would be appreciated
Posted 12/8/2015 8:26 PM (GMT 0)
GCC

You have what seems to be really good numbers. Yes, you seem to be trending upwards. I think the new recurrence trigger is based upon upward trend reaching .03. You have arrived! You had a world class surgeon with Dr Samadi. Now you need to consult with an equally as good RO specializing in prostate cancer. My RO at M D Anderson does only patients which have failed surgery and now need SRT. Good luck in your journey.
Posted 12/8/2015 8:38 PM (GMT 0)
You are still in the zero club I would say. At these low values the ultra sensitive PSA tests results could be just 'background noise' and as I have read PSA values ​​≤ 0.09 is not uncommon for residual benign prostate tissue. As a pT2 (no EPE) you probably have rather low risk for local recurrence. Next test might show a lower value again. The tests I use don't report anything until >0.05 so if I would have 0.04 I wouldn't even be notified.
Posted 12/8/2015 8:59 PM (GMT 0)
Current thinking is that if you've been <.01, once you get to .03 it's time for a little SRT. It use to be, at .1 start thinking about it and pull the trigger at .2.

You're correct about seeing an RO and others. You might want to consult with an oncologist specializing in PC. Hopefully it's just a bit of PC left in the prostate bed that the RT will zap out of there.

Andrew
Posted 12/9/2015 5:32 AM (GMT 0)
Gcc there are about 6-7 guys on this forum who buy into .03 recurrence trigger. Caveat Emptor
Posted 12/9/2015 5:35 AM (GMT 0)
Because you didn't have adverse pathology, I think you can comfortably wait until you exhibit a clear trend - either two consecutive increases over 0.03, or a PSA velocity of at least 0.05 ng/ml/year. Insurance might cover a Decipher test. Hold off on any other tests until there's a reason to have them - they don't work with PSAs that low.

In Boston, Anthony Zietman at Mass General is about the best there is.

- Allen
Posted 12/9/2015 6:44 AM (GMT 0)
Latest research shows that with combination of >.03 and a rising trend you can confidently declare a recurrence. The old idea of waiting until .2 is not consistent with current research although I think it is still part of the official guidelines which lack a bit behind state of the art. OTOH, as Tall Allen has said there is no need to jump. You could retest in 2-3 months and 2-3 months after that. it still could level off, but if it were, say .03 .05 .07 I'd definitely get radiation at that point and not wait until 0.2
Posted 12/9/2015 11:06 AM (GMT 0)
Allen,

My appointment in Boston is with Dr. Jason Efstathiou. Not sure if you know anything about him. I met with him and 2 other docs before I had surgery, with Dr. Samadi. Efsathiou actually told me to have surgery because of my numbers. I was very impressed by him. Yale, Harvard, and Oxford Graduate.
Posted 12/9/2015 2:06 PM (GMT 0)
GCC,
Were all your PSA's done at the same lab?
Posted 12/9/2015 5:37 PM (GMT 0)
Yes, I certainly know of Efstathiou - one of the best!
Posted 12/9/2015 9:35 PM (GMT 0)
samster,

My first 3 post-op were done at a different lab than my current. My docs office used to do blood work right in the office, they no longer do, so I was forced to switch. The last 5 results that I refer to were all done at the same lab.
Posted 12/10/2015 7:57 PM (GMT 0)
Nothing wrong with talking with people to gain their perspective... However the ultra-sensitive test can bounce around a bit. If it were me I would want to be sure a clear trend was evident. When is your next PSA? March? Does the lab you use now happen to be Quest or Labcorp?
Posted 12/11/2015 8:06 AM (GMT 0)
Octorobo would you mind sharing who the oncologist is at MD Anderson that does followup oncology after surgery? Had surgery there and going for followup . Thank you.
Posted 12/11/2015 12:11 PM (GMT 0)
samster,

next PSA is actually scheduled for June, since my local doc has me on the 6 month routine, because I am 2 years post surgery.
However, Dr Samadi, says to retest in 3 months, which I will.
The lab used is local here in RI, and not Quest or Labcorp
Posted 12/11/2015 1:11 PM (GMT 0)

celia01 said...
Octorobo would you mind sharing who the oncologist is at MD Anderson that does followup oncology after surgery? Had surgery there and going for followup . Thank you.

Same question I have. My RO for salvage radiation at MD Anderson is Karen Hoffman (I really, really like her, she actually listens and spends as much time with you as you need.) When an RO works up a radiation plan, it is peer reviewed by the six or seven other ROs in the department.
Posted 12/11/2015 3:02 PM (GMT 0)
My RO at MDA is Dr. Deborah Kuban. Her practice is now primarily SRT after RP BCR. She has over 30 years experience with the last 15yrs focusing on SRT. I don't think I could've found anyone better. I had interviewed her prior to my RP 18 months ago. I had decided at that time if I needed further treatment I would probably be coming back to her. Octorobo's recommendation sealed the deal. She has a great bed-side manner.
Posted 12/13/2015 12:57 AM (GMT 0)
I am in a similar situation with psa increases from 0.01 to 0.087 in the past 12 months as determined by ultrasensitive psa test. Previously there were undetectable for 18 months, following robotic surgery. So I will have another psa test at the end of December and see how psa has progressed from mid October. If I get to 0.1 or a bit beyond I will likely pull the trigger. I am also waiting results of an MRI done at Sloan Kettering just as a check to see perhaps if there are any enlarged lymph nodes or other anomalies. Unlikely to show anything but will wait and see, and perhaps the mri will give some insight as to what is causing the psa increase.

Teddy
Posted 12/13/2015 9:04 PM (GMT 0)
Thanks you John _ Tx and JFL1957 for your response. It is much appreciated.
Posted 12/14/2015 7:49 AM (GMT 0)
My RO at M D Anderson is Dr. Deborah Kuban. I could not be any more pleased with her and all of the staff at MD Anderson. They have been great.
Posted 12/18/2015 11:02 AM (GMT 0)
So I got 4 different opinions on what to do with my trending upward PSA.

My local urologist says wait until 0.2 for SRT

My surgeon says wait until 0.4 for SRT (yes 0.4)

and the oncologist and radiation oncologist agreed yesterday that 0.1 should be the trigger.

The consensus among the 4 was that the SRT would be just as effective at 0.04 as it would at 0.5, and I should wait because at the ultrasensitive level, my 0.04 might just drop down and I would receive unneeded SRT.
I have decided to re-test the PSA in 3 months and wait until 0.1 to act. Hopefully my PSA never reaches that level.

Just though I would share the info I received.
be well everyone
Posted 12/18/2015 6:37 PM (GMT 0)
You said: " and I should wait because at the ultrasensitive level, my 0.04 might just drop down and I would receive unneeded SRT."
Check out my signature block to see that I did rise to 0.04 and then went back down (and I have no real good explanation for this...) But I will take it!
Kelly
Posted 12/18/2015 7:56 PM (GMT 0)
Kelly

Thanks for sharing your info. I still a little nervous because i am trending upwards, however i do feel better about waiting. My surgeon told me he has seem some patients rise to 0.2 and then it goes back down, thats why he uses 0.4 as the trigger
Be well!
Posted 12/19/2015 1:03 AM (GMT 0)
GCC, looks like you and ferretx have very similar pathology (assuming you had negative margins, I didn't see anything about that, unless I missed it). So his comment should be very encouraging .

Good luck on the three month retest!
Posted 12/19/2015 4:24 AM (GMT 0)
@GCC interesting that you should mention your surgeon talking about the trend of going up to at least .2 then going back down. For the past year that hubby's PSA has been rising his doc. has been stating the same thing. How time and again he has seen PSA reach the .1 mark and then start back on a downward trend so we need not to worry about the rising PSA. However, this past visit even before we found out the PSA (which turned out to be .1) He started talking about how hubby will be looking at SRT in future. I thought he was just handing us a line of crap that he'd seen it go back down from .1 So now wondering what has changed his mind when (as has been stated in my own thread) at that point there was no new information. Doc's office called this morning and he's recommending hubby see a radiation oncologist. He is going to go ahead and see one just for a consult and get a re-test on PSA. ~Miki
Posted 11/21/2016 7:03 PM (GMT 0)
So back last December(2015), my PSA was trending upwards and hit .04. (.01 to .02 to .02 to .04)
I met with my surgeon, local urologist, and radiation oncologist. All 3 stated to wait until a test of .2 to trigger radiation.
Radiation oncologist said I could wait to .2, but he would be on board with giving radiation at .1.
My surgeon actually said to wait until .4, because he has seen it rend to this point and then go back down. All 3 docs told me doing radiation at .1 gives no better outcome than if you wait until .5

Since December 2015 I have had 3 more PSA tests. In March 2016 it was .02, back down. In June 2016, it was back up to .03. My most recent received today was back down to <.01.
My point is don't be afraid to wait it out a bit and maybe this idea of recurrence at .03 needs to be looked at, as I did have a <.01 went up to .04 and now I am back at <.01

I just figured I would share my experience for others that may be in the same situation.
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