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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 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 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!

User
Posted 15 Jul 2024 at 14:52

Hello all just updating that I am now 0•34 so continuing to rise a little quicker now.  Consultant is waiting to reach 0.5 before doing another PSMA hopefully that won't be within the year.

Age 53 G9 T3 diagnosis 11/18

 

User
Posted 16 Jul 2024 at 18:26

I noticed you said you'd been reading on here for 3yrs so you perhaps know more than me.

There is also the option of using diet to attempt to slow it down.   'Intermittent fasting' and 'keto diet' are two techniques said to lower oxidation in the cells and slow it down.   There's a lot on YouTube about it.  A Dr Seyfried has been an advocate for decades and is interviewed a lot on YouTube,  he get's a rather deep though.

It's one area where I feel quality of life is worth maintaining as the gains aren't as proven, in my opinion.  The full measures are quite strict about when you eat and what you eat so I do just the main bits and don't eat for 14hrs ,which is quite easy.

As a simple start it means cutting down on sugar and carbohydrates.  Eating fresh veg, tomatoes.  Not eating anything for 16hrs a day or compromise on less hours, there are some things you can eat.  A true keto diet includes meat and fat.   I can't say I've fully read up about it so it's up to you to look it up if you're interested.  

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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!

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.

User
Posted 15 Jul 2024 at 14:52

Hello all just updating that I am now 0•34 so continuing to rise a little quicker now.  Consultant is waiting to reach 0.5 before doing another PSMA hopefully that won't be within the year.

Age 53 G9 T3 diagnosis 11/18

 

User
Posted 15 Jul 2024 at 16:43
It must be very harrowing especially given your relatively young age etc but we need to remember that you started at 75 and although there is obviously something still going on, it needs to get to a size that it becomes observable. As you found out in your previous PSMA scan, there was nothing to be found as it hadn't developed to anything large enough for the scan resolution to detect.

I'm coming to a conclusion that we never fully 'cure' PCa - we control it when it's found but there are always the chances of it reoccurring at some point later and that then requires further treatments.

Are you still on any sort of HT?

Are you still able to continue your exercise regimes - as long as it isn't affecting you physically then the mental side of it will be a little easier to handle.

Good luck!!

User
Posted 15 Jul 2024 at 18:01

Hi,

I've read your profile and posts and wish you the best.   

It's good that your hospital is offering another PSMA scan at 0.5, especially doing one at 0.25 as well, although at your age they should be offering you all the options. 

Your psa doesn't rise with a constant doubling rate but it looks like it's up to 50% in 6 months.  If your next test is in January you might be around 0.5.  It seems many hospitals wait or say they wait until 0.5.  Obviously it's better to find it as soon as possible so I'll be pushing for much earlier as well.

Are you now on 6 months testing?  It depends on yourself but I didn't want to go to 6 months between tests and asked to stay on 4 months.  If you did that you might be around psa 0.4 in November and over 0.5 in March 25.  So maybe 6 months is better for you.  The other side of that is if you were over 0.4 in November you could be asking for a psma slot as it will take a couple of months to get it, with Christmas in the way, and if it's positive it will take time to find out and get RT.   Although once they found it you might go back onto HT to weaken it before the RT. 

I've seen on YouTube that a triple blast of HT, RT, HT, Chemo can be used for high grade cases.  If it becomes too tough you can ask for it to be changed or stopped.  They say PCa Chemo isn't as tough as other chemos.  Not that I know about it though.

It hasn't happened to me but I don't subscribe to the Quality of Life opinion.  I'd want the full blast and hope to live long after it.  At least I think so.

My psa is rising very slowly and so I have an interest in psa and how it turns out as I want to have PSMA scans earlier than 0.5, which is what they're saying at present. 

It would be useful if your profile was updated.  If you don't mind I wrote it down to see it more clearly, and have pasted it in below.  I'll delete it if you don't want it there.

Nov 18  Diagnosis
Jan 19  RP,  psa 1.7
Mar to May 19  AdvRT + HT
Feb 20 end HT  psa 0.01
Jan 22  psa 0.03
Mar 22 psa 0.04
Jun 22 psa 0.06
Sept 22 psa 0,08
Dec 22 psa 0.1
Jun 23 psa 0.15
Sept 23 psa 0.21
Nov 23  PSMA scan
Jan 24  psa 0.23
Jul 24  psa 0.34

All the best,
Peter

User
Posted 15 Jul 2024 at 23:23

Thanks for replying Steve and Peter.

No Steve not on HT and not planning on starting again any time soon as I struggled both physically and mentally with it.  I keep relatively fit but mentally I struggle at times with my situation especially with young children.  I suspect I have micromets so not all that hopeful of further RT.

Thanks Peter, like you happy to continue with aggressive treatment options but consultant is very reluctant to do so at this stage.  I remain on 3 month tests and will update profile.  This disease is so stubborn and accept like Steve I will always have it.   Just a matter of how long we can live together I guess.

User
Posted 16 Jul 2024 at 18:26

I noticed you said you'd been reading on here for 3yrs so you perhaps know more than me.

There is also the option of using diet to attempt to slow it down.   'Intermittent fasting' and 'keto diet' are two techniques said to lower oxidation in the cells and slow it down.   There's a lot on YouTube about it.  A Dr Seyfried has been an advocate for decades and is interviewed a lot on YouTube,  he get's a rather deep though.

It's one area where I feel quality of life is worth maintaining as the gains aren't as proven, in my opinion.  The full measures are quite strict about when you eat and what you eat so I do just the main bits and don't eat for 14hrs ,which is quite easy.

As a simple start it means cutting down on sugar and carbohydrates.  Eating fresh veg, tomatoes.  Not eating anything for 16hrs a day or compromise on less hours, there are some things you can eat.  A true keto diet includes meat and fat.   I can't say I've fully read up about it so it's up to you to look it up if you're interested.  

User
Posted 17 Jul 2024 at 20:00
Tarkadahl you still have options for targeting lymph nodes in your pelvis as you only had prostate bed RT previously (not sure why they took that route,??)

If you get to the HT stage I would also consider doubling down and asking for chemo too, lots of good evidence it's worthwhile to hit it as early as possible (checkout Dr Kwon on you tube).

Re diet I am a big fan of keto and intermittent fasting, if nothing else you will lose weight and as my urologist once told me the best way to lower risk in PC is don't carry ANY fat. Apparently it gives off hormones that just make everything worse.

User
Posted 17 Jul 2024 at 20:29

When I had my salvage radiotherapy they targeted the prostate bed plus the surgical area where 34 pelvic lymph nodes had been removed (this was all educated guess work as nothing showed up on the PSMA PET scan). The additional assault on the lymph nodes did cause some Lymphoedema in my right leg but I have no regrets. It seems to have done the trick. I've now been undetectable for nearly two years 🤞. It's a difficult decision on how radical you go and your QoL. If it was me I would be prepared to throw the kitchen sink at it if it avoided a lifetime of HT.

User
Posted 18 Jul 2024 at 08:19

They took very many lymph nodes out during surgery and there was no sign of cancer, so given the positive margin they decided to go big on the prostate bed is the best explanation I received, though it was probably like Colwick Chris an educated but ultimately wrong decision.

Diet is interesting if only to give me a sense of control over the uncontrollable I guess, which may be mentally beneficial.

User
Posted 24 Oct 2024 at 11:23

Hi Tarkadahl, 

Sorry to hear about your dx and the anguish you are going through. I am wife to a husband who's going through a similar PCa journey. He was 46 at initial diagnosis in 2016. Your conversation here popped up as I was searching for "Thyroid". He has been called in for an ultrasound scan to the thyroid on following a PSMA PET. He had SABR once already and his PSA has increased again since then. Did you have the thyroid glow investigated at all - or was it incidental? Sorry to be nosey, but I am looking for something positive at the moment. Best wishes. Rach.

User
Posted 24 Oct 2024 at 20:36

Hi Tarkadahl, on my multiple trawl of the site again today I just discovered your thread.

Very similar picture to my husband - RALP July 2020 then adjuvant RT commenced October 2020. Like yourself he had an extended pelvic lymph node dissection too (all negative). His RT was to prostate bed only too.

Now has a PSA of 0.2 after being <0.1 for almost 4yrs. His oncologist requested a PSMA scan but the radiology department have rejected this on the basis that he’s had both surgery and RT. He awaits an MRI of pelvis.

 I am taken aback that they’ve refused to perform the PSMA scan given lymph nodes weren’t irradiated and we want to discuss the option of SABR. We don’t see Oncologist until December. 

Good luck, I will be keep my eye open for your updates.

 
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