No longer undetectable

[Canoehead]

Remissions don’t last forever. I was dx. In late 2017, G-8, PSA 36, large tumor attached to prostate, seminal vesicles invasion, Mets in pelvic lymph nodes and pelvic bones. I was considered okigometastatic. We treated aggressively with Lupron, Docetaxel followed by Zytiga, and then 42 sessions of whole pelvic radiation. PSA went to undetectable (<0.01) within 6 months, and with my MO’s blessing, we stopped all meds in summer of 2019. T never recovered above 100.

Dec. of 2021 PSA was detectable at 0.01. Most recent blood test today shows PSA = 0.02. I know this is a minimal jump, but looks to me like the senescent remaining cancer cells are waking up. My MO previously said in a hypothetical conversation that he would not restart treatment until PSA >2.0. My thought is to hit it harder, the sooner the better. I know the PSA is still too low for a meaningful scan.

Meeting with the MO in 10 days. Recommendations? Should I wait for PSA to go higher? Should I suggest BAT? If I resume ADT, should it be Lupron and Zytiga, or save the Zytiga, or use a different drug?

I know this may seem insignificant to those with higher PSAs and sequentially failing treatments, but right now I am more than a bit uncertain and nervous. Thanks.

[Scout4answers]

My plan is to use PSMA pet scans or zirconium when they become available in the future.

As we know PCa is slow moving so I do not think you should start worrying yet. If and when PSA rises there are plenty of options. Let the scans be your guide. We are fortunate to have this awesome technology at our disposal.

It could take many months or even years for PSA to get to a scanable #

Open Spotify and play “Time is on My Side” by the Stones put it on repeat until you cannot hear it anymore 😎

[Scout4answers]

As an aside Szmulewitz shot me down when I brought up BAT as I ,and I asume you, are still hormone sensitive.

[Canoehead in reply to Scout4answers]

And one of the major goals of BAT is to keep you hormone sensitive.

[MateoBeach in reply to Scout4answers]

The original BAT trials were in advanced MCRPC, as all new treatments are tested there first. So hard to find an MO willing to prescribe it in HS. Have to find a Sartor or Schweizer or Morgentaler (now retired) and give them a good reason to prescribe it and be willing to sign off on the risks yourself. I am on it myself (modified longer cycle BAT) as are some others here for HSPC. BTW, those original BAT trials were seriously flawed in design, yet worked for a significant minority anyway.

[EdBar]

I’m in the same boat, kind of. My undetectable cancer (it had been that way for close to 7 years) became detectable almost a year ago. It is still extremely low I get an ultra sensitive PSA test and the highest it reached was .075. I underwent Provenge treatment last summer and it seemed to slow the rate of increase, then on my most recent labs it was undetectable again. I know this is not the norm - to have Provenge lower PSA but it does happen in a small percentage of guys. We’ll see if it holds up in my next round of labs.My plan if it begins to rise again per Dr. Sartor is a PSMA scan at 0.1, and depending on what it shows go with - SBRT or begin BAT under his direction. We’ll see how things play out.

Ed

[Drandma in reply to EdBar]

My husband also uses Dr. Sartor. What is BAT?

[EdBar in reply to Drandma]

pubmed.ncbi.nlm.nih.gov/336...

Data on the TRANSFORMER trial which Sartor was involved in.

Ed

[London441]

0.01 to 0.02 a jump? I guess you could see it that way, I would not. But more importantly, the action you’re considering to ‘hit it hard’ will almost certainly be put to better use when you know there’s something to hit and where it is.

[Seasid]

I personally wouldn't worry. You are doing fine. Better if you avoid a side effects of overtreatment. I personally think that after every treatment you have less chance to live. After your blood count is out of range they will stop giving you therapies. Every therapy has side effects. That is only certain. It is not certain that it will prolong your life. Try to keep your blood count in a normal range by avoiding overtreatment. I like the idea of your medical oncologist not to do anything until you PSA hit 2.0. if you want you can get a Pet scan at PSA 0.5 but I wouldn't rush with that either. Enjoy. You are doing great.

[MateoBeach]

Probably too early to come to a conclusion yet. But agree it is worrisome.PSMA PET might be of value at PSA of 0.1 or 0.2.

Could have a discussion about Provenge, and also discuss non-SOC modified BAT especially if you have a particularly hard time tolerating ADT. Your MO may need to have some more education (research) and support from a consultant if you want to go that route in the future.

Not too early to have the what-if discussions, even though too early to do any treatment until definitely BCR.

[Scout4answers in reply to MateoBeach]

I appreciate the depth of your knowledge Paul and your willingness to think outside the SOC box

[Don_1213]

Based on some personal experience with the accuracy of PSA tests, that "rise" wouldn't surprise me at all because there is a good chance it was caused by recalibration of the machine, or a new tech running the machine, or a rounding error (if the actual reading was 0.014 it would be rounded to 0.01, if the actual reading was 0.016 it would be rounded to 0.02. That's only a difference of 0.002 - which is meaningless.)

You're down in the noise numbers where you can't rely on the number you're given as an absolute. It would perhaps be time to start worrying if the numbers went from 0.01 to 0.10. Undetectable can mean 0.009 - again a very small difference from an actual 0.01.

The lesson here - is don't sweat the numbers without understanding how they're arrived at and their significance.

[j-o-h-n]

I think it's time you change that cologne you use on your head and think clearly. 0.01 and 0.02 is the equivalent of when you were young and kissing a girl once and kissing her twice. NO Biggie..... Stay calm.........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/01/2022 10:54 PM DST

[Canoehead in reply to j-o-h-n]

But kissing her twice greatly increased the likelihood that soon you could kiss her all over.

[j-o-h-n in reply to Canoehead]

Hmmmm Now let's see.... that sounds familiar....digging into my memory bank I somehow remember kissing this girl on the lips and saying "I love you". She said OH baby, lower, lower lower............so I said "I LOVE YOU"......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/02/2022 2:31 PM DST

[timotur]

Let it ride out, and see if a trend develops. After HDR-BT/IMRT/ADT, mine was <0.01, then after stopping ADT it oscillates between <0.01 - 0.04. After radiation, there are still residual prostate cells.

[treedown]

It's my understanding that if you did not have an RP undetectable is <.1 I have even heard some say <.2 on this forum perhaps for somebody with neither RP or RT.

[Canoehead in reply to treedown]

Thanks. Prostate was allegedly fried by radiation, but the idea that some healthy PSA generating cells could survive that or regenerate is one that I intend to explore in my upcoming appt with my MO.

[treedown in reply to Canoehead]

That small of a change old be explained by alot. Its pretty standard to watch for 3 consecutive rises as your next test might show a drop. Mine went from <.04 to .09 to .06. I take my next one in a couple weeks. Unfortunately I tested positive for covid yesterday or I would have gotten it sooner. My T recovered in about 3 months after the end of ADT.