Post RP and Adjuvant RT recurrence

User

Posted 10 Feb 2022 at 11:34

My story started over 3 years ago on 09/11 - Nov 18, age 48 GP referral with PSA 75 no symptoms - huge shock. Diagnosed T2/3 Gleason 7 3+4 clear bone scan. RP Jan 2019 - many many lymph nodes butchered as surgeon felt micro-mets were likely. No evidence of spread. Post op upgrade to Gleason 4+5 positive margins (far from positive news along with PSA 1.7) T3A N0 M0. Confident Oncology team given positive margins that prostate bed likely to be where residue cancer was. 33 sessions of RT at just prostate bed in March 2019, with the line they wanted to throw the kitchen sink at it. At same time I was diagnosed with incurable blood cancer Essential Thrombocythemia talk about getting a proper sense of one's own mortality!

PSA post RT 0.01 3 month testing all 0.01 6 month testing on tracker 0,.01 until Jan 2022 0.03. Tracker alerted oncology who eventually confirmed recurrence, because my PSA more than doubled. Back on 3 month PSA testing hospital unwilling to go to PSMA before reaches 0.1 at which point explore SABR route, is there anything else worth looking at??

As like many many other on here I am otherwise fit healthy and very active, relentlessly playing 5 a side and squash, so as not to let PC get the upper hand in my mind at least. I have a wife and 2 young children who I adore and this makes the emotional pain all that harder to take. This latest PSA result has really ramped up my anxiety and feelings of impending doom that this disease brings. As I'm 51 now and not a baby boomer I am in no position to retire so life and work must continues as normal with the knowledge that I will die with and because of prostate cancer sooner or later.

Constructive thoughts or ideas to help from this excellently supportive community would be very welcome. Having been a regular reader for over 3 years I have really appreciated the input especially from the requlars that has helped me so much. Trying not to spend much time thinking I should have taken Ulstermans route of PSMA before radiotherapy, as regret is no help to me now.

User

Posted 10 Feb 2022 at 13:48

Sorry to hear of your double dx.

Oh the angst the super sensitive tests can cause. Obviously you need to be guided by your Oncol but 0.01 to 0.03 is a very small rise and it is possible it could be due to other factors eg calibration of the testing equipment, what you did prior to the PSA test etc. so maybe keeping an eye on it for now with PSA tests a the common sense approach.

You mention they have ruled out a PMSA until your PSA reaches 0.1. Tbh that is still a very low PSA to have the PMSA scan. I have been told, as have others on here, that they would wait until the PSA reaches 1 before doing the PMSA scan as it is less likely to pick up anything before then.

Hopefully if the PSA continues to rise they will identify what is happening and can deal with it with the SABR

User

Posted 10 Feb 2022 at 19:52

Tarka different time scales and values but similar situation. Now nearly eight years post surgery and nearly five years post salvage RT.

I was refused PSMA type scan before SRT. PSA has slowing risen to 1.1. My oncology nurse said scan at 1,but oncologist said not until 2,4 or even 8. I saw another oncologist this week and he was of the same opinion on the scan PSA values. I am on a trial at the moment, when that ends in around three months, I may push for an earlier scan, I suspect I am on the placebo.

Does doubling time count below a value of 0.1 ? As said a low level of PSA may not show anything on the scan.

Thanks Chris

User

Posted 11 Feb 2022 at 06:10

For obvious reasons, Tarkadahl, your post has caused me to reflect on how lucky I have been. I wish things were different for you. Thinking of you.

User

Posted 11 Feb 2022 at 06:46

Hi Tarkadahl

As a persistent PSA after RPC club member I Don't attach to much to the "re calibration" "Orgasmic women" detectable PSA explanations. Clearly oncology think you have a problem, what you need now is to understand your options.

Good news is you are fit (you can't play 5a side if you ain't!)

Your PSA is very low

You are hormone sensetive

Things I would ask your oncologist:

What was treated by RT? Just the prostate bed or lymph nodes too? If they did the lymph nodes too then a PSMA scan would not have helped as clearly they hit something otherwise your PSA would be higher. The onco I am seeing always treats the lymph nodes. If he didn't they may be able to revisit them.

With that G5 is it worth early chemo? Or early Enzo, both have QOL issues but there are lots of examples on here of guys who seem to be doing well. I don't know if your blood cancer will limit these options.

Are you candidate for early Lu treatment or trial? This has the potential for great success in PSMA expressive cases.

I doubt they will do anything until you get a lot higher PSA scores and a PSMA scan can be done, but in a way that is good news as it means you have low PSA!

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User

Posted 10 Feb 2022 at 13:48

Sorry to hear of your double dx.

Hopefully if the PSA continues to rise they will identify what is happening and can deal with it with the SABR

User

Posted 10 Feb 2022 at 19:52

Tarka different time scales and values but similar situation. Now nearly eight years post surgery and nearly five years post salvage RT.

Does doubling time count below a value of 0.1 ? As said a low level of PSA may not show anything on the scan.

Thanks Chris

User

Posted 11 Feb 2022 at 06:10

For obvious reasons, Tarkadahl, your post has caused me to reflect on how lucky I have been. I wish things were different for you. Thinking of you.

User

Posted 11 Feb 2022 at 06:46

Hi Tarkadahl

Good news is you are fit (you can't play 5a side if you ain't!)

Your PSA is very low

You are hormone sensetive

Things I would ask your oncologist:

Are you candidate for early Lu treatment or trial? This has the potential for great success in PSMA expressive cases.

I doubt they will do anything until you get a lot higher PSA scores and a PSMA scan can be done, but in a way that is good news as it means you have low PSA!

User

Posted 11 Feb 2022 at 09:50

Thanks Brian and Chris - on reflection now yes 0.1 does seem low - I may well have got that wrong.

Ulsterman - nicely put and appreciated, I will continue to root for you to stay on your path.

Thanks Francij really helpful thinking. It was just the prostate bed that was zapped which I and indeed the radiographers were surprised about at the time. Blood cancer not an issue for treatment as far as I'm aware. Will raise all these options with oncology at next meeting next month and look in to the Lu thing.

User

Posted 16 Mar 2022 at 09:57

Update - Meeting with consultant following quarterly blood test - another very small rise to 0.04 from 0.03, which I'm taking as pretty good news. Discussed chemo she saw no reason for any of that at this point. No trials available as PSA so low. PET scan still round the corner depending how quickly my PSA score rises. Next test in June - getting counselling through Macmillan.

User

Posted 12 Sep 2022 at 13:35

PSA tested every 3 months 0.06 June 0.08 September 2022 No PET scan until PSA hits 1 is local Trust policy. Which may or may not be sometime off. Looking like a little but stubbornly growing cancer somewhere.

User

Posted 12 Sep 2022 at 15:31

T, had my scan at 1.4 and picked up a tumor in a lymph node , finished SABR just over three weeks ago, so another waiting game. Our hospital will now scan at 0.3.

Prior to advances in scans it would have been a wait for PSA to rise then HT, so things are getting better, we hope.

Thanks Chris

User

Posted 10 Jun 2023 at 11:32

Just by way of update psa continues to rise on every 3 month test. Now up to 0.15. hopes of it stalling have now gone as I badger my oncologist for a psma and hopefully SABR. 4.5 years since op 4 years since adjuvant radiotherapy just to prostate bed.

User

Posted 08 Sep 2023 at 13:49

Hello all. Latest PSA score on door is a relatively big jump to 0.21 up 0.06 in 3 months. My NHS trust only do PSMA scans at 1. Am I right in thinking all trusts have a different policy on this? I'm keen to get scanned in the hope SABR may be possible and therefore looking for a second opinion at a different hospital. Is there a way of finding out which trust scans at which level?

User

Posted 08 Sep 2023 at 18:08

T, as scans and treatments progress so does the protocol of consultant and trusts. Not sure any data would keep up with changing attitudes.

Post salvage RT my oncologist said we would not do anything until I got to 2, 4 or even 8. He the changed his mind and scanned at 1.4, our hospital will scan at 0.3. Even at 1.4 my scan did not pick up second tumor that was picked up six months later later when the PSA had rocketed to over six. Not sure where the slow growing fits in.

My oncologist said salvage RT was an educated guess based on years of experience, I think we are still guessing at treatments.

Thanks Chris

User

Posted 12 Jan 2024 at 17:39

Latest PSA 0.23 as of today. Slow and steady which is of course as good as I could hope for Managed to get PSMA in November as I went past 0.2 nothing found except some glow in Thyroid test for which inconclusive. So will try to put to back of mind for next 3 months whilst hoping my recurrence remains slow for a G9.

User

Posted 12 Jan 2024 at 18:52

Hi Tarkadahl,

it's good that you got the PSMA and it showed nothing of concern. I'm 5 years on from diagnosis (when I was given a life expectancy of 3 to 5 years) and my consultant has always emphasised QoL to me, and he's right. Focus on how you feel, and on doing what you enjoy as much as you can.

Wishing you all the best, and keep on keeping on!

Craig

User

Posted 13 Jan 2024 at 10:21

Thanks Craig having read your profile and now thread you have my total respect for the way you are managing your situation. I agree living your best life inspite of PC is the only way to go. All best to you in continuing to keep on keeping on for many years to come.

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