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Posted 6/26/2019 7:27 PM (GMT 0)
Hey guys,

Got my latest uPSA and I'm up to .055 3 years post RP. A continuing trend of about .01 rise every 3 months. I kind of knew where this was heading, but it really sunk in when I got an email from my surgeon's office that stated "PSA is back".

I started the process of finding an RO about 6 weeks ago and settled on Dr. Horwitz at Fox Chase Cancer Center outside Philly. From what I understand, he is well respected. I have a consult with him on July 15.

So, as when I first got on this board 3.5 years ago, I am now searching for success stories for post RP, 4+3, T3a SRT outcomes. I hear that I am still possible "curable", but I just get the sinking feeling that I am just kicking the can down the road a bit. But, there are no other options. With my current trend, I may be able to hold off SRT (and HT?) for 3-6 months or so. I figure by the end of the year, I'll be around .08-.09 or so. I believe that's still considered "very early" SRT.

Anyway, I'll check in again after my consult on July 15. Happy 4th!

J
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Age at Dx: 54 (DOB: 01/28/62)

08/31/15: PSA 2.5;
01/01/16: Urinary Frequency;
02/05/16: DRE Pos Nodule;
02/22/16: Biopsy;
02/26/16: Dx: 7-12 positive; (5) 3+3=6; (1) 3+4=7; (1) 4+3=7; T2B;
03/11/16: Bone Scan Neg;
03/23/16: CT Scan Neg;
03/31/16: Surgery Consult UPENN;
04/08/16: RT Consult/2nd Op Fox Chase CC upgrade to 4+4;
04/14/16: 3TMRI "organ confined", EPE-, SV-, LN-;
06/01/16: DaVinci @ UPENN (Dr. D. Lee);
06/08/16: Catheter Out;
06/08/16: Post-Op Path: EPE+;Marg +;SV-;LN-;G7(4+3) (G4 80% - G3 20%);tumor vol 25%;T3a;
07/01/16: Start 5mg Daily Cialis, 20mg once a week on Friday's;
07/06/16: Decipher: 0.56 (Average Risk);5 Year Metastasis 7.6%;10 Year PCa Specific Mortality 6.9%;
08/01/16: Penile rehab started (Pump);
01/30/17: Decipher GRID PORTOS: Avg ADT Response (21%);Avg Docetaxel Sensitivity (56%); Lower RT Response (45%);Avg Dasatinib sensitivity (38%);High Genomic Gleason Grade (81%); High Metastasis Risk (70%);High Tumor Cell Proliferation (82%);Avg AR Activity (56%)];
09/26/18: 99% continence (some stress every now and then); ED no issue (5 mg Cialis/Day);

Post-op uPSA History:

08/31/16: uPSA <.006; (3 months);
12/01/16: uPSA <.014; (6 months);
03/01/17: uPSA <.006; (9 months);
06/01/17: uPSA <.006; (12 months);
09/01/17: uPSA <.006; (15 months);
12/01/17: uPSA .007; (18 months);
03/01/18: uPSA .010; (21 months);
06/22/18: uPSA .015; (25 months);
09/21/18: uPSA .018; (28 months);
12/21/18: uPSA .035; (31 months);
03/22/19: uPSA .044; (34 months);
06/21/19: uPSA .055; (37 months);
Posted 6/26/2019 8:25 PM (GMT 0)
JayMot, well, that sort of sucks, its a pretty clear trend. I finished SRT + ADT in November, so the jury is still out for me, but as you can see from my sig, my pathology was not the same as yours. But i'm pretty sure you will get some success stories shortly. Obviously, your positive margins give you a better chance of success. Beyond that i am not knowledgeable enough to comment, except to say, that recent studies show the earlier you hit it, the better, in this type of setting..here's the study that one of the RO's i consulted with, referred to, when my PSA was .06.... https://jamanetwork.com/journals/jamaoncology/fullarticle/2670381

In that study, Adjuvant Radiation Therapy was defined as RT with PSA below .1, and Early Salvage defined as PSA between .1 and .5. They found better results in men with adverse pathology when choosing ART/Treating at PSA .1 or less.

Good luck, please keep us posted
Posted 6/26/2019 8:54 PM (GMT 0)
JayMot
You are young. Go with all the firepower - earlier than later. I would not wait any more. uPSA at 0.03 is what the new recommended Threshold for taking the next step.
Posted 6/26/2019 9:44 PM (GMT 0)
I'm no expert on SRT, but if this is truly a trend, why wait 3-6 months? I believe I have read here that pulling the trigger sooner is better.
Posted 6/26/2019 9:52 PM (GMT 0)
let me chime in. do you want to beat cancer? if so why on earth would you "hold off" for 3-6 months? if I were in your shoes i'd start ADT ASAP. and get that plan together with an RO that you should have done a year ago.
Posted 6/26/2019 9:58 PM (GMT 0)
F8, Michael T, ddyss,

That's what the consult with the 'expert' is all about. The study about the .03 and higher, from what I understand, is that 3 successive rises above the .03 should tell you where this is going. Furthermore, the Uro doctors at UPENN advised me to seek an RO at .06. So, here I am. 3 successive rises after .03 and pushing .06. Let's see what my RO says in 3 weeks (july 15). I'll let you know.

J
Posted 6/27/2019 1:27 AM (GMT 0)
I agree with F8 and if I were in your place I'd start the RT asap. The trend is clear, so why wait?
FWIW I was a 3+4 pT3 patient that had rising PSA within 8 months. I had a bad pathology with EPE, PSM and SVI. 40% of my prostate was cancerous. I had RT and I've now been 21 months undetectable.
Posted 6/27/2019 10:45 AM (GMT 0)
Jay,

Read the post from NorCal. Similar situation and he pulled the trigger pretty much on time and has positive results.

PCa likes it when you wait. It hates it when you treat. If you let any get out of the radiation field before treatment, then it was all for nothing. The only reason the PSA is increasing is that there is still PCa working.
Posted 6/27/2019 2:30 PM (GMT 0)
JNF and others are right in my opinion after just going through a similar situation. I made the ART call after 3-4 months as the 2nd opinion G9 and small pos margin just made the time element too risky in my opinion. I may or may not have helped my situation, time will tell.

I am not so sure 3 years after surgery would be considered early other than your PSA is low so you would be getting that early in the rise which is good No telling where it is coming from after 3 years but radiating the local area now would seem to be prudent. Early is always better and there is no risk of overtreating at this point based on your numbers. Your RO will probably be encouraging SRT in a few weeks so get prepared for it. You will have to see if he suggests ADT as well prior to treatments. He may also want a current CT or MRI scan like they did prior to surgery to check for local issues. It is probably too early for any fancy scans. Also make sure he is proposing the IMRT/IGRT treatment protocol for best results, worked well for me with daily scans and minimal side effects so far.


Good luck and hope you fare well.
Posted 6/27/2019 2:57 PM (GMT 0)
Mumbo, I am using the term "very early" to mean starting SRT (and HT?) initiation at values below .1, as mentioned in several studies. I have also seen the term ART used in some studies, simply by using the psa value less than .1. See the link that Pratoman posted above.

So, just an FYI, I am fully prepared to start NOW. I have my meeting in less than 3 weeks with my RO. I am sure at that time, I will be scheduled for CT scan, MRI????, bone scan etc. I have a week long family vacation the first week of August in 6 weeks. I am hoping NOT to get my first shot of HT until I return. Then I guess its onto RT in Sept and Oct. It will be driven by my RO recommendations. If he says NOW, then I guess it's NOW.
Posted 6/27/2019 3:26 PM (GMT 0)
"I have a week long family vacation the first week of August in 6 weeks. I am hoping NOT to get my first shot of HT until I return."

because the vacation is more important than defeating cancer.
Posted 6/27/2019 4:32 PM (GMT 0)
JayMot - Sorry, I did not mean to imply you were not early based on the classical definition of 0.10. However, since you are monitoring very low levels of PSA and can see the pattern, the definition of early becomes relative to when you first know you have a problem, which appears to be now as you noted. So the clock starts ticking and any delays after this point would be “less early” if that is a better way of saying it.

Nothing you can do prior to your RO meeting other than study it some more but I would be prepared to move ahead pretty soon and maybe you start ADT in July if recommended and treatments after vacation. From my experience, it takes a couple weeks to get the actual treatments going since they do a scan, prepare a treatment plan, check insurance coverage, etc which would put you at your vacation time. At this point, a week is meaningless, especially if on ADT, but you might want to start treatments when you return. Just do the best you can with the full understanding that earlier is better and you now have PCa again based on rising PSA. Good luck at your RO meeting.
Posted 6/27/2019 4:36 PM (GMT 0)
Jaymot, you can get your first shot before vacation with no repercussions, especially if it’s lupron. I was on Firmagon which is faster acting. And it still took about 4-6 weeks before I started feeling the effects.
Posted 6/27/2019 5:01 PM (GMT 0)
JayMot,
I'm not sure the 0.03 threshold has gold standard status yet. Yes, your PSA is trending upwards, but only by very small amounts. I'm not sure the urgency I sense from other posts is necessarily warranted. Just my two cents. See what the doctor says at the consult. I think he's in a position to give you sound advice.
Posted 6/27/2019 5:04 PM (GMT 0)
What Prato said. Although I’m sure everyone’s story is different, I didn’t feel the fatigue or other side effects from Lupron until 6 weeks after the three-month depot.
Sorry you’re in this situation but as others have said it’s “early” per the low psa.
Posted 6/27/2019 5:25 PM (GMT 0)
F8, You should not judge one person's view of quality of life. I view starting HT as a quality of life issue. If my RO says 3 weeks will not change a thing, then I'm ok with that. if he says asap, then that changes things and I'm ok with that. The funny thing, other major cancer centers don't even use uPSA. MSK in NYC tests down to .05. And I think Mayo or Cleveland Clinic don't test below .1. At MSK, I would have just shown up detectable. At the other(s), I'd still be undetectable. I think I'm acting responsibly. Just because "I hope" something happens doesn't necessarily mean "I expect" it to happen.
Posted 6/27/2019 5:47 PM (GMT 0)
JayMot,

Even if SRT does not effect a “cure,” it may push PSA back into the undetectable range for a good, long time. In my case nearly three years elapsed after SRT before the dragon announced again. That was three very good years without ADT or other treatment. Just another consideration. Best wishes.
Posted 6/27/2019 6:59 PM (GMT 0)

JayMot said...
F8, You should not judge one person's view of quality of life. I view starting HT as a quality of life issue. If my RO says 3 weeks will not change a thing, then I'm ok with that. if he says asap, then that changes things and I'm ok with that. The funny thing, other major cancer centers don't even use uPSA. MSK in NYC tests down to .05. And I think Mayo or Cleveland Clinic don't test below .1. At MSK, I would have just shown up detectable. At the other(s), I'd still be undetectable. I think I'm acting responsibly. Just because "I hope" something happens doesn't necessarily mean "I expect" it to happen.

it's your call. my comment is for the next guy and I stand by it. good luck to you!
Posted 6/27/2019 7:01 PM (GMT 0)

NewspaperLover said...
JayMot,

Even if SRT does not effect a “cure,” it may push PSA back into the undetectable range for a good, long time. In my case nearly three years elapsed after SRT before the dragon announced again. That was three very good years without ADT or other treatment. Just another consideration. Best wishes.

that's certainly not the way I view it. the way I see it is this is the LAST chance at a cure. make it count.
Posted 6/27/2019 9:19 PM (GMT 0)
JayMot - Adjuvant RT is typically defined as PSA <0.10 and within 6 mos of surgery. Salvage RT is for later RT with different PSA limits such as 0.20 and 0.50 with ESRT being done at less than 0.10 typically but I am not sure that the definitions are quite that rigid as the different terms are tossed around.

The best curative time to do RT is soon as practical after surgery with a non-detectable PSA but at that point there is no reason to do it because you do not have a problem on paper thus the risk of over-treating patients that don’t need it comes in and possible insurance pushback.

In your case, it appears you have monitored the small PSA values enough now that you know you most probably have a problem thus will have to do something soon. The question of when and how much you do is a personal decision that only you can make. F8 is being a little short in his comments but wants the best for you and to beat the beast based on his many years here. I tend to agree with him since you will want to know that you did everything possible to achieve a cure if it’s possible. Hopefully your RO will come up with a plan you like and support and allows your vacation to be enjoyable.
Posted 6/27/2019 10:30 PM (GMT 0)
Howdy JayMot,

Just pulled trigger 6 weeks ago on ADT @0.1 PSA. I only just showed up on my RO’s concern list given his 0.05 threshold but I had seen the trend before (by getting my own more sensitive test) and made plans accordingly. I think you are acting very prudently and I fully support you with good wishes for an effective outcome. My instinct is you will be advised to do ADT as was I. I would t worry about it creating any discontinuities in your vacation plans based on my experience. I definitely notice a difference and it will likely ramp up but planning trip next week. F8 rang my bell as well and it was a push that actually added to the certainty on my decision and thus was appreciated. Best of Luck!!!
Posted 6/28/2019 2:47 AM (GMT 0)
Five years ago we got 28 of us together from this forum on a GFMPH Caribbean cruise. It truly was a vacation. Probably half of us (me included) were on ADT. It in no way interfered with our wonderful vacation.

If anyone thinks a little ADT will get in the way of a vacation, they are either very disillusioned or listening to idiots.

If you have cancer and you want to beat it, then treat it.
Posted 6/28/2019 6:45 AM (GMT 0)
believe me my intentions are good. i'd rather see you do six months of Lupron now than be on it for the rest of your life. talk about quality of life issues. that was always my biggest fear. chemical castration for the duration. even after it quit working.

forget the studies. it's back.
Posted 6/28/2019 4:08 PM (GMT 0)
AJMan, Can I ask, when you hit the .06 in Jan, why did you wait until May to start treatment? Did it take that long to do the scans, MRI, etc., or did you want a couple more psa data points? What did your RO say in Jan? My Uro, who is chief of urology at UPENN uses the .06 threshold as an indicator that the next phase should begin, kind of similar to your RO's .05. I knew where this was heading, so when I got my .044 3 months ago, I started setting things up with an RO. Contrary to what some people believe, setting up appts with leading RO's at nationally recognized cancer centers doesn't happen overnight.
Posted 6/28/2019 5:01 PM (GMT 0)
Catching up on this thread after a few days...for the record, I totally get where you're coming from in terms of wanting to start *after* your vacation. It's not like there's any sort of clear line you cross at a certain date and you can see that you've passed the point of cure. I think you're being reasonable enough.

That said, I don't think the HT would physically mess up your vacation...for me it was more of a cumulative effect over time so it probably wouldn't be that big of a deal in the near term. But if for psychological/emotional reasons you want to get the vacation out of your system before re-starting treatment, I think that's fine.
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