PSA rising to 0.11, 5 months after RP Surgery

User

Posted 14 Sep 2018 at 14:02

hi I had a successful prostate operation on April 10 2018. Pathology report was Stage 2C Gleason 7B no lymph nodes etc no positive margin. Pre-operative PSA was 4.5 and PSA at initial alert level was 3.07. Found evidence of Tumour via MRI advanced scan in Feb

PSA post op at end May was <.03. New PSA test yesterday was 0.11. Very concerned about what cancer returning since I thought might have been clinically cured at least. Only other thing I was having was lymphatic draining masage since as a precaution they took out 29 lymph nodes. Not sure if that disturbs lots of older PSA cellls moving about

anyone had similar experience and what next besides watch and wait or start with RT.

I feel as if I have been reset to the start again, do I retest the PSA in a month, should I have scans...

thank you so much for ideas and similar experiences

User

Posted 14 Sep 2018 at 14:34

Hi Mid,

That is an extraordinary situation. I am begining to think that negative margin after a successful operation is meaningless as an indicator for biochemical reocurrance. Also your post opperative PSA at <0.03 is a textbook outcome. I would get the PSA re-tested for confimation and if you have more data points confirming this jump then start to research and prepare for salvage RT/Other options.

PSMA would be a good image test to get done to see whats going on.

Fresh

Edited by member 14 Sep 2018 at 17:05 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 15:15

Anything less than <0.2 is not classed as bio-chemical recurrence and several specialists I have spoken to have little faith in what they call ‘super-sensitive assay’ to two decimal points.

Indeed, my billion-pound local Super-Hospital only provides PSA tests figures to one decimal point and so when they tell me my PSA is ‘undetectable’ I am quite happy. Ignorance is bliss!

Keep calm and carry on with two or three monthly tests until the reading is >0.2 and then Choline and other PET scans might be called for before any further treatment.

But of course, ask what your doctors suggest right away.

Cheers, John.

User

Posted 14 Sep 2018 at 17:20

Click my picture and read my profile. It’s well detailed. Might be pertinent to your situation!

If life gives you lemons , then make lemonade

User

Posted 14 Sep 2018 at 17:20

The research that interests me most is suggesting that there is a 2.5% drop in (the next crap shoot) SRT effective cure rate per 0.1% of PSA after first line surgery. Which I think is what’s driving the ADJUVANT trend. My prof said we will use belt and braces (RP then Ray Gun) but two separate 50/50 roles of the dice doesn’t Equal 100% success. I think it all comes down to delaying aggressive PCa and those that wern’t aggresive never second guess their good fortune. It begs the question .... does anything cure or are we all playing for time.

Fresh

Edited by member 14 Sep 2018 at 18:48 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 19:00

Chris I read your profile and that sound like quite an ordeal, and strange the scans didn’t pick up anything, how on earyh they can give you a prognosis lifespan wise without evidence doesn’t seem right. But I’ve seen similar cases to you with people at 14 years and countiing so keep moving. Mentally I am with you it is a train wreck to go through all that mentally. I understood the new PSMA scans with Gallium68 are very advanced at picking up cells at lower than .5. is that the one you had?

User

Posted 14 Sep 2018 at 20:39

Originally Posted by: Online Community Member

I am beginning to think that negative margin after a successful operation is meaningless as an indicator for biochemical recurrence.

Negative margin is meaningless but positive margin is highly indicative.

Generally, if the PSA falls below 0.1 at the first post-op test (at least 6 weeks post-op) and then creeps up slowly, it suggests some stray cells left around the margins. If the first post-op PSA is above 0.1 or the PSA is low but then rises sharply, it is indicative of mets or more substantial 'left behind' tissue.

The unreliability of usPSA only applies up to the point of 0.1 - above 0.1 it is no longer ultra-sensitive so 0.11 would be considered a true reading.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2018 at 20:58

Fresh - I have done a ton of reading on scientific papers recently and additional reading about the reliability of evidence based research and the problem is that it is all over the shop. Very few replication studies are done and there are a lot of statistical thinking errors in a lot of reserch. Cue Veritasium - https://www.youtube.com/watch?v=42QuXLucH3Q.

Lynn - you are correct but the problem is that there are grey areas of uncertainty around BCR. Ian's consultant seems to think he has mets afer a 1 year BCR. I hope and pray he does not. I have a one year BCR and my consultant refuses to comment on risk, PSA velocity (I dunno if it counts as a fast rise or not) or say anything other than "nuke it and see". I have had a hard fought battle to park it until it happens and still wobble. I also get the feeling that if you are TXc N0 M0 they don't really discuss the fact that there is still potential risk. We are in the dark.

User

Posted 14 Sep 2018 at 21:41

Hi Mid Take a look at this ...

ADT vs SRT

Hi Pete. The study I’m quoting from is not quackery. We all have to be judicious about what we read or don’t read. I plonked it down in front of the surgeon who performed my RP and mentioned that he was listed as a contributor. He stopped talking about Gleason from that point....

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 22:01

https://pcnrv.blogspot.com/2018/01/new-study-adjuvant-radiation-saves.html

That's the link, it needed a tweak

I'm not qualified to say but in my opinion sensitive psa testing and earlier intervention should be the norm for RT cases.

Edited by member 14 Sep 2018 at 22:18 | Reason: Not specified

User

Posted 15 Oct 2018 at 11:11

Mine was 0.05 repeatedly then 0.16 / 0.17 / 0.24 from about 9 months post RP.

I was given a CAT (?) scan and put onto SRT and HT.

I have given up on trying to interpret how bad this is because I have had so many different stories:

*My oconologist refused to discuss any prognosis but initiated HT and RT which I assume they would not have done if mets were a given
*Lynn and others have said in the past to me that 0.17 was typical of stray cells at my staging and recurrence point
*The oncologist who did the talk I attended recently said I was only getting six months of HT with the RT because that is typical for non high risk
*Someone said above in this thread that 0.11 after 5 months is rapid and could be stray cells or mets (so similar to mine)

I've given up trying to guess my future apart from accepting that at some point probably sooner rather than later this sodding thing will kill me but I intend to fight it in the interim

I hope your salvage treatment whatever it is sorts this out

User

Posted 15 Oct 2018 at 12:13

Midcentury, the 18F tracer could be:

- FACBC 18F - has had good results in biochemical recurrence (BCR) cases - mostly trialled in Italy but now being trialled in some centres in England as well. It is also referred to as Axumin / Fluciclovine 18F - being trialled in the UK and USA.

- Flourine 18F - is the most common tracer but is not so good at identifying small clusters in BCR cases.

However, Flourine 18F with PSMA is quite new and much more precise than Flourine on its own.

There is also a tracer called Gallium 68/F-18 commonly used with PSMA.

Complicated enough without the added issue of translation :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Oct 2018 at 14:03

Originally Posted by: Online Community Member

It was actually 1.5 Lyn , a total failure with spread to lymphs. It was 2.2 three weeks later

Yes, sorry CJ - fat fingers, small phone :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Oct 2018 at 14:05

Originally Posted by: Online Community Member

I wonder why there is not chemotherapy or a Tamoxifen-like drug for biochemical recurrence for PCa. I am not at that stage fortunately, so have not looked into it.

Cheers, John.

Because chemo can't cure prostate cancer, it can only wound it to make RT / HT more effective. We do have two or three members that have had early chemo with RT/HT combo but it is extremely rare.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Nov 2018 at 15:56

Hormone therapy and radiotherapy combined has better outcomes rather than radiotherapy alone is my understanding.

I started HT three months before salvage radiotherapy and for around two years after.

There are others on this forum who have had salvage radiotherapy without hormone therapy.

Hopefully more comments will come.

Ian

Ido4

Show Most Thanked Posts

User

Posted 14 Sep 2018 at 14:34

Hi Mid,

PSMA would be a good image test to get done to see whats going on.

Fresh

Edited by member 14 Sep 2018 at 17:05 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 15:08

Thanks Fresh, yep I’m a little stunned by the result. But have an appointment to talk with the surgeon next week and see next steps. I think they might want to check the PSA again in a month to see what it’s doing and then have some follow up scans such as you say. I must say it’s odd given the surgical outcome but really worrying. Will keep board updated

User

Posted 14 Sep 2018 at 15:15

Anything less than <0.2 is not classed as bio-chemical recurrence and several specialists I have spoken to have little faith in what they call ‘super-sensitive assay’ to two decimal points.

Indeed, my billion-pound local Super-Hospital only provides PSA tests figures to one decimal point and so when they tell me my PSA is ‘undetectable’ I am quite happy. Ignorance is bliss!

Keep calm and carry on with two or three monthly tests until the reading is >0.2 and then Choline and other PET scans might be called for before any further treatment.

But of course, ask what your doctors suggest right away.

Cheers, John.

User

Posted 14 Sep 2018 at 16:27

<0.2 is an intervention level. It’s the level at which action is deemed to be necessary. Look at the profiles of members who have been monitoring at three or two decimal places. There are none that have directional trend under 0.2 that have not breached 0.2 from those I have read.

take Lyn’s (John, post op 0.049) as a good case in point. I didn’t have to read further to know he was definitely heading for SRT). There is plenty of evidence now to say that post operative detectable PSA that is recorded at 0.03 or higher have a massive correlation with chemical reoccurrence.

Those people who happily live with one place of decimal are not seeing trend below that number or (more likely) are in the camp of incredibly slow growing PCa and will get reoccurnace much later - see my post on “Gleason is dead“ that research is startling.

Fresh

Edited by member 14 Sep 2018 at 16:59 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 16:48

I take your point which may or not be relevant in my own case, but although I am not ignorant, I am blissfully aware that although I have been told that I have been cured by my oncologist, I am not so naïve as to believe him.

So if (and when, most likely) I suffer bio-chemical recurrence, I will consider my options, such as chemical castration and Dan Dare and his ray-gun.

I have looked at the Nomograms with morbidity rates for my condition with and without adjuvant / salvage treatments and they vary very little.

If I have to be subject to ‘kill or cure’ chemicals and radioactivity I would prefer it to be later rather than sooner. I might have died of something else first!

Funny, people ask me “How painful is your cancer, how are you?” I tell them I have had no pain and have never felt so well.

Cheers, John

Edited by member 14 Sep 2018 at 18:49 | Reason: Not specified

User

Posted 14 Sep 2018 at 17:20

Click my picture and read my profile. It’s well detailed. Might be pertinent to your situation!

If life gives you lemons , then make lemonade

User

Posted 14 Sep 2018 at 17:20

Fresh

Edited by member 14 Sep 2018 at 18:48 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 19:00

User

Posted 14 Sep 2018 at 20:39

Originally Posted by: Online Community Member

I am beginning to think that negative margin after a successful operation is meaningless as an indicator for biochemical recurrence.

Negative margin is meaningless but positive margin is highly indicative.

The unreliability of usPSA only applies up to the point of 0.1 - above 0.1 it is no longer ultra-sensitive so 0.11 would be considered a true reading.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2018 at 20:43

Originally Posted by: Online Community Member

take Lyn’s (John, post op 0.049) as a good case in point. I didn’t have to read further to know he was definitely heading for SRT).

Whether or not that was where he was heading wasn't the main issue - if you could find my posts from that time you would see that I also knew (or feared) that was where he was going but that was down to being upgraded to T3, the finding of PNI and having to have part of his bladder removed during the RP. The issue in our house was him accepting that he needed SRT at all and then wanting to wait until the side effects of the RP had abated somewhat.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2018 at 20:58

User

Posted 14 Sep 2018 at 21:04

Would you classify this as a sharp rise in PSA? regardless it sounds as if there are some left over cells which means SRT unfortunately,

User

Posted 14 Sep 2018 at 21:41

Hi Mid Take a look at this ...

ADT vs SRT

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 14 Sep 2018 at 21:51

The link doesnt work as says page not found?

User

Posted 14 Sep 2018 at 22:01

https://pcnrv.blogspot.com/2018/01/new-study-adjuvant-radiation-saves.html

That's the link, it needed a tweak

I'm not qualified to say but in my opinion sensitive psa testing and earlier intervention should be the norm for RT cases.

Edited by member 14 Sep 2018 at 22:18 | Reason: Not specified

User

Posted 14 Sep 2018 at 22:32

Originally Posted by: Online Community Member

Would you classify this as a sharp rise in PSA? regardless it sounds as if there are some left over cells which means SRT unfortunately,

Unfortunately, yes - I imagine you will be referred to oncology for advice and it will be worth asking for the best quality scan they can offer you. If it is stray cells in the prostate bed or a couple of lymph nodes then ART is wise and usually has good outcomes; if it is mets, ART is probably not going to be offered.

Edited by member 14 Sep 2018 at 22:41 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2018 at 22:40

Originally Posted by: Online Community Member

It begs the question .... does anything cure or are we all playing for time.

I don't think there is such thing as a cure for cancer - NICE and most oncologists only talk about it as remission. My dad got his letter from the NHS 10 years post-RP congratulating him on achieving 'full remission' ... but it still came back 3 years later.

Our local hospital, a centre of excellence for cancers generally and urological cancers particularly, was involved in a trial which offered ALL men ART following on from RP regardless of their pathology - Mr P tells me that data showed the outcomes to be much better than for RP on its own. Of course, there will be more risk of side effects.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Sep 2018 at 09:21

This nomogram extracted from the report makes for interesting "fiddling". Also confirms the benefit of USPSA testing for high risk (T3) cases who don't have ART:

http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

For higher G scores especially there is a marked improvement with early treatment ie less than 0.1 PSA.

Edited by member 15 Sep 2018 at 09:22 | Reason: Not specified

User

Posted 15 Sep 2018 at 09:46

I have seen the Cleveland Nomograms and had a dabble with them. The one my oncologist uses - the guy who told me I am cured 😂😂😂😂😂 is the one below.

Frankly, as there is nothing wrong with me I can’t be bothered to fill any of them in any more, but when I mentioned before that I have not been psychologically affected at all by my cancer diagnosis, I may have been mistaken.

I think I have become the Messianic Jehovah’s Witness of prostate cancer awareness, much to the disdain of people around me and also on here! Expect to see me on a soap box in a town near you.

https://www.mskcc.org/nomograms/prostate

Edited by member 15 Sep 2018 at 09:49 | Reason: Not specified

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