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PSA rising to 0.11, 5 months after RP Surgery

User
Posted 14 Sep 2018 at 15:02

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 15:34

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 18:05  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 16:15
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 18:20
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 18:20

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 19:48  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 20:00

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 21:39

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 21:58
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 22:41

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 23:01

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 23:18  | Reason: Not specified

User
Posted 15 Oct 2018 at 12:11

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

P

User
Posted 15 Oct 2018 at 13:13
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 15:03

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 15:05

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 15:34

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 18:05  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 16:08

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 16:15
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 17:27

<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 17:59  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 17:48

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 19:49  | Reason: Not specified

User
Posted 14 Sep 2018 at 18:20
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 18:20

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 19:48  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 20:00

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 21:39

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 21:43

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 21:58
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 22:04

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 22:41

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 22:51

The link doesnt work as says page not found?

User
Posted 14 Sep 2018 at 23:01

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 23:18  | Reason: Not specified

User
Posted 14 Sep 2018 at 23:32

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 23:41  | Reason: Not specified

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

User
Posted 14 Sep 2018 at 23:40

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 10:21

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 10:22  | Reason: Not specified

User
Posted 15 Sep 2018 at 10:46

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 10:49  | Reason: Not specified

User
Posted 15 Sep 2018 at 11:04

MSK nomograms are considered the most reliable and are used all over the world but usually adapted downwards in UK urology departments because outcomes here tend to be worse than outcomes in New York. The ‘english’ adjustment Is then adjusted again regionally so the version of MSK used at Jimmy’s will be slightly different to the one at UCH etc.

Don’t discount them though - most urologists, oncologists and MDTs will use them as predictors.

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

User
Posted 15 Sep 2018 at 11:57

Midcentury

Within a year post RP, my psa went from 0.014 to 0.023.  I had a PSMA scan for which I had to pay, but it found the remaining cancer.  I was pT3b, Gleason 9, positive margins, pni etc

I've now had SRT and am on bicalutimide.

Lyn - is there a link to any of the UK nomogrammes?  The US ones rate my chances as 65%, with which my oncologist agreed.

 

ulsterman

User
Posted 15 Sep 2018 at 12:29

Was your PSMA a Gallium 69 scan, (as I intend to call it from now on, Matron)?

Not very much different from an MRI, I guess? Do they just use a different radioactive ‘dye’?

And the 63% refers to what? Biochemical recurrence? Morbidity within ten years?

Thanks, John

Edited by member 15 Sep 2018 at 12:32  | Reason: Not specified

User
Posted 15 Sep 2018 at 12:44

Fresh

I wrote my post in haste. It was not my intent to take a pop at your research. I'm sorry if I offended you.

All I was trying to say was what you said was that we have to be diligent with what we read because there is a lot of conflicting information out there and not all papers are equal.

Pete

User
Posted 15 Sep 2018 at 13:14

Pete, no apologies required my friend I can’t be offended. I watched the video you posted and dont disagree with it at all. I have a good academic background with a strong science bias.

Fresh

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

User
Posted 15 Sep 2018 at 13:22

Originally Posted by: Online Community Member

Lyn - is there a link to any of the UK nomogrammes?  The US ones rate my chances as 65%, with which my oncologist agreed.

 

ulsterman

 

I don’t know. Mr P showed it to us on his screen - first the % on the MSK and then the result when adapted for local data. With a PSA of 3.1, small soft prostate, clear scan, assumed T1 and age 50 the nomogram predicted a 55% chance of biochemical recurrence. 

After SRT, Mr B put the stats in and got an 80% chance of J still being here in 10 years. 

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

User
Posted 15 Sep 2018 at 13:26

Originally Posted by: Online Community Member

After SRT, Mr B put the stats in and got an 80% chance of J still being here in 10 years. 

Matron, sorry to be Mr Pedantic, but is Mr B a new actor on the scene or Mr P in alias?

Cheers, John

User
Posted 15 Sep 2018 at 13:34
And the other thing about Nomograms is that the fifteen-year old recurrence and survival scores are from medical technology fifteen years ago, which has changed dramatically.

And they don’t take any account of the skill of a surgeon during a prostatectomy. I hope I backed the right horse - so far - so good!

User
Posted 15 Sep 2018 at 17:19
Mr B is John's oncologist aka Mr Bottom
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2018 at 17:20

Originally Posted by: Online Community Member
And the other thing about Nomograms is that the fifteen-year old recurrence and survival scores are from medical technology fifteen years ago, which has changed dramatically.

And they don’t take any account of the skill of a surgeon during a prostatectomy. I hope I backed the right horse - so far - so good!

 

Yes of course, that's why the medics that use them then adapt the results for local trends. 

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

User
Posted 15 Sep 2018 at 17:45

Bollinge 

Yes, I had a Gallium 68 PSMA scan.  Not really much different to the Choline PET scan I had, except that it cost around £2600.

The 65% refers to biochemical recurrence.  So, according to the MSK nommogramme, I have a 35% chance of recurrence within the next 5 years despite SRT and HT.

Ulsterman

User
Posted 15 Sep 2018 at 22:35

As regards more advanced scans, I did post a link sometime ago wherein the course of a lecture a Professor said that in Australia they only used the Choline one for about 6 months before adopting the better 68 Gallium PSMA one. As has been mentioned elsewhere, even this scan does not work for 5 -10 % of men with PCa as member Chris will attest. However, research into scans continues and one developed by Marty Pomper and his team at John Hopkins termed 18FDCFPyL showed more mets than the 68 Gallium in on in a small trial. Larger trials are now underway mostly in the USA and Canada.

I have posted this before but for those who have not seen it, I like the reasoning of Eugene Kwon to treat early while the cancer is small and before it mutates. It is principally about oligometastic disease. It should be pointed out that this lecture was made before the 68 Gallium PSMA began to be widely adopted. Bear with the credits at the beginning. This Dr has been widely praised on an American forum and look at the comments beneath the video. https://www.youtube.com/watch?v=NkqizmvqJPo

What do you think?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited by member 15 Sep 2018 at 22:41  | Reason: Not specified

Barry
User
Posted 15 Sep 2018 at 23:40
None of this really helps midcentury though. Yes, mc - it would seem sensible, if the repeat PSA comes up with a similar number, for your urologist to refer you to oncology and you can ask the oncologist what the best scan is available to him/her. If they cannot get you one of the better quality scans you could ask whether any trials are available in your area - where I live, they are trialling the FCAPC tracer which is supposed to be highly sensitive for biochemical recurrence and as written above there are other tracers available either as trials or privately.

Fingers crossed that your repeat PSA is fine and this turns out to have been a freak result.

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

User
Posted 16 Sep 2018 at 03:31
"None of this really helps midcentury though." Perhaps should be left to midcentury to decide this.
Barry
User
Posted 16 Sep 2018 at 03:46

I have just had a copy of the letter from the oncologist to my surgeon in which he states: “.....there is no randomised trial evidence to inform if there is benefit from adjuvant radiotherapy (now) versus a salvage radiotherapy if he were to have biochemical recurrence”.

I note what Matron said about the school of thought that everyone should have RT after surgery, and read the paper linked to above, where it said it will be several years before the results but as my PSA is “undetectable” currently, I am more than happy to go with the oncologist’s recommendation. Especially as there is nothing wrong with me 😉

Edited by member 16 Sep 2018 at 04:38  | Reason: Not specified

User
Posted 16 Sep 2018 at 07:22

Originally Posted by: Online Community Member

“.....there is no randomised trial evidence to inform if there is benefit from adjuvant radiotherapy (now) versus a salvage radiotherapy if he were to have biochemical recurrence”.

Thats because the RADICALS trial is not complete. The trial is a confirmation study on US data that is very compelling. The risk factors that predict biochemical reocurrance seem to be;

a) Detectable PSA and a value of 0.03 is used, however I think that number is just the first reliably observed number above the commonly used “undetectable” (<0.02) in the same way that 0.1 and <0.1 were used historically. A post operative detectable PSA is hugely significant. 

d) Pathology staging of T3 (any T3)

c) Positive surgical margins

d) PNI invasion

e) Extra capsular extension

Put simply. Any positive margin means your not likely to get that post operative remission period. The sad bit is that it seems that it’s only the aggressive cancer that tends to breach the nerve bundle. So the less aggressive gets bagged and binned leaving a 40% or 80% chance (depending on uni lateral or bi lateral sparing) of a stiffy but a 100% chance of PCa.

Fresh

Edited by member 16 Sep 2018 at 07:25  | Reason: Not specified

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

User
Posted 16 Sep 2018 at 08:31

Life’s a gamble. I’ll take a chance....for now.

I’ll see if I can get a second oncological opinion at the Royal Marsden.

Cheers, John

Edited by member 16 Sep 2018 at 09:00  | Reason: Not specified

User
Posted 16 Sep 2018 at 09:22

Fresh what you are saying simply isn't that black and white.

There are guys with positive margins who don't progress, guys with high grade T3 who don't progress and guys with low and stable PSA who don't progress.

That's the problem with ART medics know they overtreat.

What radicals will ultimately report (I beleive) will be in line with the original US research it's the only sensible outcome.

So should Fresh have ART? possibly but there is probably only a small risk waiting to get a PSA trend to be sure.

Should Bollinge have a supersensitive test? Yes IMHO life would then be less of a gamble because if it comes back as "less than" he can have greater faith in a full remission. BTW if the "professor" really mentioned the cure word he needs re-educating!!!

Should I have ART? Well I was offered the radicals trial but I didn't want a flip of a coin to decide if I had RT so I declined. So far I think the decision was correct, I have recovered my erections, I am continent and my PSA is still very low 3 years on. So I think I have, will I die of PC as a result of not doing ART? Only time will tell!.

Most important of all should midcentury have ART with that PSA? IMHO not without a second test (never do anything on the basis of 1 test!) . But if it's still over 0.1 he should certainly be consulting with an oncologist.

Edited by member 16 Sep 2018 at 09:26  | Reason: Not specified

User
Posted 16 Sep 2018 at 09:46

Originally Posted by: Online Community Member

Should Bollinge have a supersensitive test? Yes IMHO life would then be less of a gamble because if it comes back as "less than" he can have greater faith in a full remission. BTW if the "professor" really mentioned the cure word he needs re-educating!!!

The Professor said “I can cure you“ on the basis of the pre-op biopsy PSA 16 odd G4+3=7; T2aN0M0.

The oncologist said “You are cured“ following <0.1 PSA G4+3=7; T3aN1M0 post-op.

The Professor had a chance of being correct.

Cheers, John.

User
Posted 16 Sep 2018 at 12:59

Originally Posted by: Online Community Member

There are guys with positive margins who don't progress, guys with high grade T3 who don't progress and guys with low and stable PSA who don't progress.

Agreed francij but that’s because Gleason is no measure of aggressiveness. So in the absence of risk stratification there will be variability. The category you mention are most likely sitting on very low risk PCa. Does anyone know the NHS position on ART/SRT are there levels at which they won’t permit you to have RT?

Fresh

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

User
Posted 16 Sep 2018 at 14:00
If you are a T3 you are entitled to ART if your consultant thinks there is a benefit, that's always been the case I believe.

The trend all over the world has been to use much less ART largely (I beleive) as a result of USPSA.

The biggest single danger with PCA is overtreatment this too has probably driven the move away from ART over the last 10 years.

Like most things it may now be overdue a correction.

PS Fresh I think you are wrong about Gleason score (but maybe for the right reason?).

GS is a physical manifestation of what has happened and is a proven indicator of disease pathology. No it doesn't explain everything but the stats certainly support the fact that a G5 is worse news than a G3??

User
Posted 15 Oct 2018 at 11:52

Hi All

 

Just an update to this thread. Second PSA now one month apart as of 11 October is 0.16.  On 12 Sept it was 0.11, which shows it advancing fairly rapidly post operation in April.

 

So end May <0.03

September 12 - 0.11

October 11 - 0.16

We are living in Germany currently so it is always a challenge to speak to Doctors or challenge the tests and our insurances doesn't seem to cover the PSMA/PET scans so have to pay for that.  Anyway we have a tentative PSMA/PET scan in Heidelberg on Oct 29. I believe they will use some test which is 18F as prefix, so that means it should be more sensitive to finding where this new growth is. The Prostate Bed, the lymph nodes or further out. They took out 32 lymph nodes from the pelvic region in the RP which all of them showing negative. But it takes only one to be positive I guess to cause this, it is like hyper worrying why it is going up so fast.  Thanks again all for your comments.  I had to take a breather to relax before but now I am back on this journey again.  take care all

User
Posted 15 Oct 2018 at 11:56

Anyone know of a similar situation of PSA rising so rapidly after RP? My Gleason was 7B so fairly aggressive, but obviously there must be a fair chunk of cells sitting somewhere expanding !

User
Posted 15 Oct 2018 at 12:11

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

P

User
Posted 15 Oct 2018 at 12:22

Hi thanks for the reply and yes it looks as if we are in a similar situation.  Did they ever do scan to prove that it was local or mets? Did your PSA reduce now after all that. What an ordeal, I am dreading the RT, but have to knuckle down and do these things.  The good news is you have caught at early stage both before operation and after, so now it is like living with an acute disease.  Realise that diagnosis is so different it is like dodging the landmines.  All the best and thank you for responding!

User
Posted 15 Oct 2018 at 13:01

Originally Posted by: Online Community Member

*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 was commenting on the pattern rather than the actual numbers. Generally, if the first post-op PSA is undetectable / less than 0.1 and then it rises fairly steadily, this is a classic sign of cancer left behind in the prostate bed and RT has a good chance of sorting it out. If the first post-op PSA is high (like ChrisJ with his 0.15) this is indicative of mets or oligomets and RT is unlikely to be successful. The benefit of RT is less clear when the post-op PSA is low but then rises rapidly.  

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

User
Posted 15 Oct 2018 at 13:13
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 13:17
Thanks for the clarification LynEre. I guess it depends on where the recurrence is, because SRT can really only help recurrence if you know where it is, so doing pelvic irradiation may not get it all. If it went to the lymph nodes it might not get it as an example. Well thats what I have been told
User
Posted 15 Oct 2018 at 13:31
It was actually 1.5 Lyn , a total failure with spread to lymphs. It was 2.2 three weeks later

If life gives you lemons , then make lemonade

User
Posted 15 Oct 2018 at 13:57
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.

 
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