Tall_Allen2 years ago

Everything looks good - I don't understand what you are anxious about. Every 3 months is fine - random fluctuations of more frequent tests will drive you crazy. In fact, try to get a PSA test whose lowest value is 0.1.

SooHwa99 in reply to Tall_Allen2 years ago

I understand random fluctuations. I am anxious because my RO stated she feels I am detectable even at such a low PSA and where we should go from here. I was hoping to stay NED for a bit longer and while the PSA is extremely low at this juncture I don't feel I am wrong for being concerned. I just don't know where to go from here.

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Tall_Allen in reply to SooHwa992 years ago

detectable on a test is not the same as significant. When you are at the bottom of detectability of a test, there is a great deal of error (in statistical terms, the standard error of the test is greatest at its lowest limit). Therefore, random fluctuations of error should not be a concern.

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Justfor_2 years ago

That is quite natural. You wrote that you had sRT in January 2020 when you probably also started 6 months of ADT. All the PSA tests you have taken during the interim period from, say, July 2020 to present were influenced by the ADT, *NOT* the sRT. The effect of the ADT is currently washing out, so from now on you will see the true outcome of the sRT. You will have to wait for this and also monitor your hormones along with PSA. Your lab quotes 2 decimal point figures, consequently, until up to 0.06 the rounding error supersedes the test accuracy of 20%. You can have more frequent tests now, but the acid test will start post 0.06.

SooHwa99 in reply to Justfor_2 years ago

My Testosterone was 356 in August and 456 in December 2020. I started ADT in November 2019 and finished April 2020.

My testosterone level has returned to pre ADT levels and my RO feels that any PSA currently is reflective if that.

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Justfor_ in reply to SooHwa992 years ago

Right. With 450 T you are witnessing the real thing. As I wrote elsewhere with more frequent sampling you can, after a bit of number crunching, drill down the numbers. If you want to know sooner you can do that, but the 0.06 still applies.

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Steve507 in reply to Justfor_2 years ago

Typically, how long after Salvage Radiation will one get a good idea of how effective the radiotherapy was without any ADT? Thanks

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Justfor_ in reply to Steve5072 years ago

Don't know of any fixed interval. Rather an evolutionary process. I can imagine three scenarios:

1. Total success. PSA will start with an exponential decay, reach a nadir and stay there for a long-long time.

2. Partial success/failure. Like in 1. but after reaching the nadir and stay there for a while an exponential growth to start.

3. Total failure. No nadir to reach, continuation from the whereabouts of the pre-sRT PSA levels.

You have to monitor the PSA kinetics to get an idea regarding which of the above cases better matches your personal one.

If you are anxious to learn, as there are many here that have already advised you that is better not to know, you will have to find a reliable lab quoting 3 digital points and go with monthly tests. From my personal experience a PSA trend's glimpse can't be obtained with fewer than 6 samples. Mind you that I have taken 21 PSA tests within less than 2 years and there have been two (~10%) astonishingly in error. The naivety of people basing important treatment decisions on isolated PSA tests never ceases to amaze me.

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Steve507 in reply to Justfor_2 years ago

Thanks for your thoughtful response. I had 12 PSA tests in 20 months post RP at 0.01 nadir I used two different labs and assays simultaneously for the last 4 x4 tests as my PSA rose from 0.02 to 0.05 in 7 months. The results with both assays were consistent.

At present, <0.01 This the result of the one 3 month injection of zoladex. SRT ends Thursday. I feel great and all is ok! Just a bit of an OCD personality.

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LearnAll2 years ago

"Undetectable PSA" in a man who has had his prostate surgically removed means any PSA 0.1 ng/ml or less. Always Remember this basic fact.

Note: This definition does not apply to men who still have their prostate gland.

SooHwa992 years ago

The cribriform was mixed with adenocarcinoma and was from the pathology after the prostatectomy.

Of course I had blind IMRT post prostatectomy as I was never undetectable after the prostatectomy and PSMA scans were not available. I had an Axumin scan prior to IMRT, but of course my PSA was too low for it to be of real value at the time.

I and my RO decided to be aggressive and not wait until I had a significant rise of PSA to get salvage radiation.

Thank you for all your amazing information.

Do happen to be aware of treatment paths for this situation? The PSMA has recently been approved by the FDA in the US, so hopefully I can actually get one to pin point where the recurrence actually is.

SooHwa992 years ago

I had brought this up to all the physicians and they gleaned over it. I think they felt the initial overall pathology was so good they weren't worried.

Even the RO glossed over it too. Even when my Decipher came back at 7.1.

It is just so frustrating that I had such a clean prostatectomy. I know in the past you have stated that it is assumed that it is entirely possible that things potentially have already left the prostate area.

SooHwa992 years ago

Oh no worries. Understandable from my tag name. I am not Asian. Italian/Irish. My wife is Korean and it is my youngest daughter's name.

LearnAll2 years ago

Your Doctor is probably being extremely cautious. And that's fine.

Jmr118202 years ago

I understand your concern, as one on this site who owns a high DECIPHER risk as you do. Because of that test I started RT when PSA went from.01 to .03. So, I’m following responses to your question with interest. I’m going for a PSA check next week and have considered what I will do if my numbers have crept up. Have you had or are considering genetic testing? Seems like a reasonable thing to do.

SooHwa99 in reply to Jmr118202 years ago

I had genetic testing. No genetic component whatsoever.

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Jmr11820 in reply to SooHwa992 years ago

Which genetic test did you choose? Interested because I’m considering that. Thank you.

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SooHwa99 in reply to Jmr118202 years ago

I cannot remember. I will have to look it up. It was genetic testing for BCR, etc., not actually on the tumor itself.

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Blackpatch2 years ago

Hi SooHwa

I’m in the high-Decipher club too (0.91) and understand very well the anxiety it brings.

That said, it seems you have done everything you should have with a high Decipher. Arguably you might have stuck with the ADT for a little longer, but none of the studies I’ve seen would suggest this would have altered the outcome.

The SPPORT RTOG 0534 trial indicates inclusion of the pelvic lymph nodes in the field of irradiation is valuable - there may be an option to go back and address this.

Did the PORTOS score in your Decipher GRID results tell you anything about your susceptibility to SRT?

There are a range of views about the micro-PSA test, but I subscribe to the position spelt out above by Natalkrats, having read a PhD thesis from a Danish university that tracked micro-PSA results through into the +0.1 range... so I think you’re right to be casting around for alternatives. PSMA scans aren’t going to be of much use to you unless your PSA gets up towards 0.2 - my PSA got to 0.117 before ADT and eSRT and the PSMA scab was still blank at that point - I know it sometimes works at these lower levels, but usually not.

In the near term, I think the pelvic lymph radiation possibility could be a sensible place to begin investigations.

Good luck! Stuart

maley2711 in reply to Blackpatch2 years ago

what type of investigations?

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Blackpatch in reply to maley27112 years ago

What I mean is that it sounds like it would be worth investigating pelvic lymph node irradiation.

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SooHwa99 in reply to Blackpatch2 years ago

I actually did 6 months of Lupron with my radiation. I know the PSMA has finally been approved in the US, but there is currently no time line at the University of Chicago where I am being treated, will be available.

I guess if at some point I need to figure out what the optimum level of PSA is to optimize a PSMA scan to see where it is and if pelvic lymp node radiation would be feasible if that is where it is at.

I also would like to do monthly PSA checks, but I feel there is such resistance from many physicians to doing this. I will be broaching the subject with my RO again, but there again I may have to go find an appropriate lab that runs a similar test.

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SooHwa992 years ago

Is there a way I can send you my pathology report? I tried to upload screen shots here without success.

GreenStreet2 years ago

I agree with you unfortunately because that is my position. I have had three rises below 0.1 and am still below 0.1 but SRT and 6 months ADT has not worked because something is clearly there. That is the view of oncologist at RMH in the UK. Currently being monitored via PSA because chances of locating by scan at less than 0.1 are low. Dilemma is whether to wait until it can be scanned or hit with systemic therapy. Not an easy one. I am going for the latter because currently my PSA doubling time is greater than 12 months. Not great but I am where I am!

SooHwa99 in reply to GreenStreet2 years ago

I think that is the really hard choice. Do you allow it to grow and try and find and do a local treatment and risking potential spread elsewhere or go on systemic ADT indefinitely obviously knowing it will become castrate resistant.

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GreenStreet in reply to SooHwa992 years ago

Yes it is tricky mentally and who knows if you take the right call. I am not being pressurised to go early on systemic ADT at this stage possibly because of PSA doubling time. I am holding off for moment. Best possible result I would think is to find something in a lymph node that is treatable but perhaps a long shot. I just have to hope I get lucky. Best wishes to you and good luck with whatever decision you make.

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SooHwa992 years ago

One lesion was 4+3 the other 3+4. The Gleason 7 was cribriform.

SooHwa992 years ago

50% was Gleason 4 cribriform poorly formed and fused cells.

SooHwa992 years ago

I was genetically tested, mainly I wanted to know for my children...no BCRA, etc.

Obviously I need to push for monthly PSA testing or pay for it my self and hope the PSMA scan is more widely available in time.

I think we are going to have to change our insurance to a regular BC/BS plan too. Right now we work at the University of Chicago and all care must go through them. It is kind of like an in house HMO. Clearly I will need more flexibility.

leach2342 years ago

0.03 Nanograms per Millileter is pretty undetectable if you ask me. A nanogram is 1 billionth of a gram!

SooHwa99 in reply to leach2342 years ago

It should say <0.03 to technically be undetectable.

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leach234 in reply to SooHwa992 years ago

Why do you say that? If you went to a lab who’s lowest reading is 0.05 your reading would be <0.05 and we wouldn’t be having this conversation. I recently had my blood work done at my doctors office when I had my annual physical and it came in at 0.03 (using their own lab). Then I had it done at Quest Diagnostics the next month for my 6 month PSA draw an it came in at <0.02. Little variations are unimportant. It’s the trend you should be focusing on and at this time it is too early to worry about that. For all you know 0.03 may be your new norm and it will stay there forever!

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SooHwa99 in reply to leach2342 years ago

I completely understand that and that I need to look at a multi result trend.

I was at 0.04 after my prostatectomy and I watched it progress rather quickly to 0.13 in 6 months. Still low I know, but it was never undetectable.

I also had a high decipher score and cribriform pathology in one of my lesions.

I am a Registered Nurse in a Pediatric ICU, so I clearly don't wonk out over one lab result, but it was markedly disappointing to say the least and giving how quickly it progressed after my prostatectomy concerning and upsetting to me given my track record thus far.

I sure hope and would love thar you are correct and I am madly wrong.

I guess we'll see.

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leach234 in reply to SooHwa992 years ago

Just to let you know I was also a crib ductal adenocarcinoma and a Gleason 8 ductal adenocarcinoma at that!

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SooHwa99 in reply to leach2342 years ago

Ok...you win...lol. you got me beat!

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leach234 in reply to SooHwa992 years ago

It’s been 3 years for me and my PSA has always been <0.02. However, I have read that ductal adenocarcinoma may not give off much PSA (it is so rare that not much is really known about it) . So as I approached my 3 year anniversary I just had a pelvic MRI which confirmed no spread.

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SooHwa99 in reply to leach2342 years ago

Well, thank heavens for that! Congrats! Hope it stays that way forever.

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Patrick-Turner2 years ago

In Australia, where I live in Canberra, we measure Psa accurately down to 0.01.I've had Pca since about 2004m but not diagnosed until Psa was 6 in 2009, and then I had Gleason 9 and inoperable, and very likely spread to many places, and spread was not seen in scans until I had first PsMa Ga68 scan in mid 2016. Initial treatment was 2 years ADT + 70 Grey EBRT, which which failed completely when I stopped ADT after 2 years to find out if treatment worked I've been back on ADT since 2013, now fighting numerous bone mets after having Cosadex, plus extra salvation 31Grey IMRT to PG in 2016, which didn't work, then Zytiga failed after 8 months, chemo failed, and Lu177 failed after 2 years and now Psa is 250 and I'm having Ra223, which may not work because the kill rate of Ra223 may not occur faster than the growth rate of mutated mets in bones.

There are limits to how much drug treatments can be given to beat cancer because treatment can easily become so toxic to body that I might get intolerable side effects or get leukemia, or woteva.

A huge number of men have RP early enough to get rid of all PG tissue entirely, so nothing is left behind which can develop Pca later. But another huge number of men have Pca continue on after RP in site of op or in mets which began before RP.

Whether RP gets rid of all Pca depends in how soon Pca is diagnosed, and I believe an RP should be arranged if any Pca is found when Psa not more than 3.0. But old chat groups based on Pca in 2009 had men talking about getting yearly biopsies if Psa > 2, and those who had immediate RP if any Pca was found had a chance of not having to post anymore to a group based on Pca because their Psa went below 0.01 and never ever appeared later. One man had exactly same initial treatment I had with low Gleason score, and probable weak strength low aggression Pca cells and 10 years later told me he was fine, so I would be, but he didn't realize some of us get diagnosed with aggressive cells and "young man's type of Pca" and that's what I got. Its likely to kill me.

Quite a few men like myself have had to endure the Long Fight, still going on, and my Pca looks like it will win, despite all the treatments.

I also know of men who worry badly when Psa moves from 0.01 to 0.02 in 6 months.

If doubling time is 6 months for Pca, then over 5 years its 10 doublings, and Psa increases by factor of about 1,000, so 0.01 could become 10 over 5 years if nothing is done.

If RP gets rid of what caused Psa to get to 4, and there was a small amount of spread with 6 months of doubling, then this is what men so often have to fight, and and it does not show up in any scans until Psa reaches about 2.0, and doubling rate could be a lot faster, and in my case my Psa was rising 2.7 times each month. Its terrifying, but I have grown able to not worry because this is what my Pca was always likely to do, if it ever mutated to avoid the killing effects of all the treatments I have had so far.

Docs think my mutated Pca is putting out much more Psa than original Pca at PG and in old mets. So although my situation seems terrifying to men who are worried sick when Psa moves from 0.02 to 0.04, or from 4 to 8, etc, there are some men who have had Psa go to 1,000, and then a given treatment reduces Psa to > 2, and then Psa zooms back up and one guy who had video link here had Psa do this about 4 times, and finally, he just does not hope to ever beat his Pca. I may not be alive in a year.

But I am living normally with no symptoms of Pca yet !

I can cycle 80km easily, and have averaged 200km a week since 2009, and I am nearly 74, and I'll spend all today In my craft work shed doing stuff, and so what if I am riddled with Pca.

Without any treatment I would have died in about 2011, but docs have delayed death by about 10 years, and if Ra223 works as best it ever could, I might live a lot longer.

My fitness levels make all side effects minimal, and my general health stats are excellent, but I do not think staying fit and healthy has stopped my Pca progress, and it could be argued that because I have strictly enforced a policy of frugal good lifestyle for me, then the Pca has also done real well, and it finds me to be a very home in which to grow. My immune system is real good, but but cannot see that my Pca is the enemy. My IS could even be helping and aiding my Pca to flourish. The longer I live, I have become able to ask questions that docs cannot answer, and Big Pharma will never ever talk about many issues after their products have become useless after months of a year or two.

We just do not have good treatment of cancer that works for everyone.

If you are anxious about Psa rise, its because you are frightened by cancer, and its quite normal to experience this feeing of dread, and its very different to when you were 30 and riding on the crest of a wave, and seemingly invincible. I just know that the "The older I get, the better I was..."

Nobody gets to stay young forever, and if rising but low Psa levels are terrifying, then maybe you are terrified by a number of other things, and its part of what you are, and of course you ain't alone, and if you looked closely at human drug consumption, you'd find many tonnes of pills are taken daily each week by millions of men and women who have mental trouble dealing with 101 things about existence. But if Pca did not happen in me, then something else may have been an equal or worse problem to have. My dad died at 60 from melanoma in 1973 when diagnosis meant death was only a year away, and there was so little good treatment for any cancers. My mum lived to 98, dying from fragility of plain old age. She didn't like dying, and she fought her anxiety for many years, and spent a fortune on psychotherapy, and drugs, but she was a good mother.

I put head on pillow and I'm asleep soon, no matter what happens. I worried about work problems, but the man who does not worry at all cannot function at all. Worry and stress and mistakes hopefully lead us to wise living, success, but the process is never ever perfect, and once over 50, we are beginning to fade down. And health bothers invade us, and none of us can fully control what happens, or how we feel about it. At 73, I don't want to bore everyone by telling them about my failings, or about what life didn't give me, or about what docs could not do; there was never ever any perfect path to follow to avoid what actually happened.

I got to get to shed; I have a busy day to get through.

Patrick Turner.

Karmaji in reply to Patrick-Turner2 years ago

Nice to read....If you are in top shape then why worry about PC...I ask if PC is only in numbers and not in your mind body.

I am 81 and docs told me I have T3BN0M1... a real bull shit. They call M1 even if there are two tiny spots or all over in Choline Pet scan.

As I never have any PC symptoms...but doc tell me I have and they say if I do nothing it will be all over in few years.....with ADT and RT I have all scortched earth symptoms.. no libido hot flashes and feel tired but not tired etc......have a glass of wine and just look at rising sun and full moon....

I activate libido thinking of my erotic past and it comes back thru mental channels with a bit of tadalafil....Doc says you should be happy .you r alive ...libido has no importance... sure doc never tasted erotic being........

Friends live fully and dance with death as she is also enjoyable...

BYE BYE Love

Hallo Happiness

I think I am going to Die....(All that Jazz film)

All my affection to friend when PC does havoc and pain...

.The therapy is scortched earth, very ancient and docs give a shit of quality of life. I may not die of PC but of toxic second reactions..... sure they think PC is cured..as I am dead...

.SO friends have a cool mind

do not panic

listen to your inner self

follow protocols ....no choice

with all life saving supplements like NAT Learn All others and enjoy to BE..I am fully alive till dead...and we are born to die ....

Just enjoy dying it is a beautiful journey shedding rotting robe...and entering non physical state....our true nature

do not forget laughing and PC will not stop us from to BE

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SooHwa99 in reply to Patrick-Turner2 years ago

Thank for a very kind post. Wishing you well and continued good function as long as possible.

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Neathuh12 years ago

Your R/O doesn't feel you need to see an oncologist???? It's easy to be cavalier about a disease she'll never have. I also had ductal and am thankful everyday that I got to M D Anderson no later than I did. Mine had already spread to my lungs.

Get to the best specialist you can without delay. And best of everything to you!

SooHwa99 in reply to Neathuh12 years ago

No she actually had me see one last year just to start a relationship just in case I needed him. I will be asking her if I can see him soon.

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Ralph19662 years ago

You need PET scan (Axumin, or other more advanced scans). But it will show nothing now as your PSA is too low. I believe they will order PET scan in order to decide how to treat any relapse only when PSA goes higher.If they find oligometasthasis to bones then focal Radiation. If 1-2 lymph nodes then biopsy/surgical removal with or without ATD injections.

SooHwa99 in reply to Ralph19662 years ago

Thank you very kindly. I did have an Axumin Scan prior to my salvage radiation and as you stated my PSA was too low to detect anything. The PSMA has been approved by the FDA finally in the US, so maybe when or if I get to that point I can have an appropriate scan to actually find something.

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juvety2 years ago

Hi Nalakrats, These calculations of three consecutive PSA rises, are true only if they are monthly measurements? What happens if the psa rises but very slowly? do you have the link to these studies? Thanks a lot!