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Advice needed psa rising

User
Posted 18 Feb 2020 at 18:00

Briefly.. I had a RP in October 2014 aged 52 My psa was 0 for 33 months, then rose to 0.08 in August 2017. It then meandered up and down but eventually rose to 0.1 in March 2018. My consultant suggested SRT combined with HT but I opted just for the SRT in June 2018. My psa dropped to 0.00 August 2018. All was well until June 2019 but then my psa reappeared at 0.04 and this month (Feb 20) hit 0.1 once again.

My consultant has now said to wait another 6 months before testing again and has indicated that he won’t take any action until my psa hits 5! 
Please, anyone out there with a similar experience, does this seem a safe course of events? Thanks in advance.

original diagnosis.. psa 4.7  template biopsy said 3+3 Gleason 6 upgraded to 3+4=7 t2c no mo after lab report

Am I reading too much into a potentially short doubling time? Can you use doubling calculators with low numbers?

Thanks
Adrian

 

 

 

User
Posted 18 Feb 2020 at 20:14
ADJ, take a look at my profile where John's PA results are listed. Following RP 10 years ago and then salvage RT 8 years ago, his PSA crept up and has bobbed along at between 0.1 and 0.11 for the last 3 years. He continues to have 3 monthly tests and regular reviews with the urologist and / or oncologist but we have no intention of doing anything until there is evidence of a problem. The onco has said he will arrange scans if it rises significantly and targeted RT if there is a visible recurrence away from the prostate bed but since it has stabilised, it may just be that he produces a high level of 'healthy' PSA. We are not concerned and I don't think you should be yet, either.

The thing about waiting until it gets to 5 does make sense, believe it or not, although some oncos say that they would wait until 10 or even 20. There is a difference between the level at which it is accepted that there is a recurrence (0.2 or 3 successive rises above 0.1) and the optimum point at which to reintroduce treatment, particularly as the treatment will usually be long term HT and is not curative. HT has a limited lifetime of usefulness so the earlier you start taking it, the earlier it will stop working. Waiting until the PSA gets to 5 or whatever means that you have delayed the time when you run out of treatment options. I imagine that you could press for scans once it gets to 2.0 rather than wait until it gets to 5.

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

User
Posted 18 Feb 2020 at 22:47

Adj

Very similar to yourself, my PSA rose to 0.33 last week a couple of years post SRT without HT. My next step is to wait until PSA gets above 1 at which point I will be getting some sought of scan. I discussed the 5,10, or 20 intervention figures and our onco nurse says it all depends on rate of rise and individual circumstances.

Thanks Chris

User
Posted 18 Feb 2020 at 23:25

Someone on here wrote recently doubling shouldn't be used as a criteria below 0.1.

It seems odd that it was hit by the SRT but then came back.  Is it possible to have a psa bounce with SRT.  Lyn seems to imply it is.

When you say your psa was 0, did it not have a 'less than' figure?  It's unusual to be zero.  I assume you've always used the same hospital lab.

I can't add experience, but all the best. Peter

User
Posted 18 Feb 2020 at 23:53

I haven't suggested anything about PSA bounce after RT - if there was such a thing, it wouldn't be this late after treatment, I think, as 18 months post-RT the PSA should be hitting its nadir. 

Sadly, lots of men have a recurrence after salvage treatment; if you need salvage treatment your chance of ever achieving full remission is significantly depleted.

Edited by member 18 Feb 2020 at 23:56  | Reason: Not specified

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

User
Posted 19 Feb 2020 at 06:22

I would be pushing for a scan to find it, but you probably need to wait until PSA is a bit higher before the scan has a good chance of finding where it is. It probably isn't in the previous radiotherapy target area, and if it's far enough away and no more than a few hot spots, it might still be treatable with some focused radiotherapy such as cyberknife.

User
Posted 08 Jul 2021 at 10:26
Did they target any lymph nodes when you had your salvage RT? Or was it just the prostate bed?

At 0.3 might be worth a PSMA scan and hopefully anything picked up will be targetable with some more RT.

Otherwise 3 monthly tests to get a better idea of the velocity hopefully you will have many years before it hits 5 and you need to start systemic treatment.

User
Posted 04 Aug 2021 at 21:40

Adj 

I did reply to you last year, not much has changed, my last PSA was just over 0.6, my histology was, positive margins and extraprostatic extension. The oncologist has different ideas to the nurse he thinks a scan at 2 , 4 or even 8. 

I often see it said, the sooner you start HT the sooner it will stop working. 

Thanks Chris

 

 

User
Posted 04 Aug 2021 at 22:31
Maybe read my profile ? I’m 54 now and had surgery at 48. My post op psa was 1.5 with multiple lymph spread ( too late ). I rejected SRT as they thought the spread and rising PSA was more lymph based so SRT wouldn’t work. And I didn’t want further grief to my tackle at 48 on a doctors whim. My psadt was always roughly 8 months , but in 4 years Of scanning nothing visible until last 16 months. Eventually gave up and went on HT last February. My psa had risen to 990 and some discomfort was settling in , and scan showed tumours in spine ribs clavicle and various lymph’s enlarged in body. I feel fine now but guessing on a steady decline As soon as my diagnosis went from G9T4N1 to M1 I was told I’d probably have median 3 to 5 yrs.Already had 3 doses of RT to spine and ribs to bolster the HT up. The fear comes and goes. It’s a nasty drawn out disease which takes from you as a person year by year unless you get lucky from the start.

My wishes to you

If life gives you lemons , then make lemonade

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User
Posted 18 Feb 2020 at 20:14
ADJ, take a look at my profile where John's PA results are listed. Following RP 10 years ago and then salvage RT 8 years ago, his PSA crept up and has bobbed along at between 0.1 and 0.11 for the last 3 years. He continues to have 3 monthly tests and regular reviews with the urologist and / or oncologist but we have no intention of doing anything until there is evidence of a problem. The onco has said he will arrange scans if it rises significantly and targeted RT if there is a visible recurrence away from the prostate bed but since it has stabilised, it may just be that he produces a high level of 'healthy' PSA. We are not concerned and I don't think you should be yet, either.

The thing about waiting until it gets to 5 does make sense, believe it or not, although some oncos say that they would wait until 10 or even 20. There is a difference between the level at which it is accepted that there is a recurrence (0.2 or 3 successive rises above 0.1) and the optimum point at which to reintroduce treatment, particularly as the treatment will usually be long term HT and is not curative. HT has a limited lifetime of usefulness so the earlier you start taking it, the earlier it will stop working. Waiting until the PSA gets to 5 or whatever means that you have delayed the time when you run out of treatment options. I imagine that you could press for scans once it gets to 2.0 rather than wait until it gets to 5.

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

User
Posted 18 Feb 2020 at 21:25

Thanks for this. It’s exactly why I posted, I’m looking for others with experience as every step along this path is new. 
Best wishes

Adrian

 

User
Posted 18 Feb 2020 at 22:47

Adj

Very similar to yourself, my PSA rose to 0.33 last week a couple of years post SRT without HT. My next step is to wait until PSA gets above 1 at which point I will be getting some sought of scan. I discussed the 5,10, or 20 intervention figures and our onco nurse says it all depends on rate of rise and individual circumstances.

Thanks Chris

User
Posted 18 Feb 2020 at 23:25

Someone on here wrote recently doubling shouldn't be used as a criteria below 0.1.

It seems odd that it was hit by the SRT but then came back.  Is it possible to have a psa bounce with SRT.  Lyn seems to imply it is.

When you say your psa was 0, did it not have a 'less than' figure?  It's unusual to be zero.  I assume you've always used the same hospital lab.

I can't add experience, but all the best. Peter

User
Posted 18 Feb 2020 at 23:53

I haven't suggested anything about PSA bounce after RT - if there was such a thing, it wouldn't be this late after treatment, I think, as 18 months post-RT the PSA should be hitting its nadir. 

Sadly, lots of men have a recurrence after salvage treatment; if you need salvage treatment your chance of ever achieving full remission is significantly depleted.

Edited by member 18 Feb 2020 at 23:56  | Reason: Not specified

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

User
Posted 19 Feb 2020 at 06:22

I would be pushing for a scan to find it, but you probably need to wait until PSA is a bit higher before the scan has a good chance of finding where it is. It probably isn't in the previous radiotherapy target area, and if it's far enough away and no more than a few hot spots, it might still be treatable with some focused radiotherapy such as cyberknife.

User
Posted 19 Feb 2020 at 07:23
I find it strange that after 10 months at 0.00 my psa returned. The drop from 0.1 after the salvage looked like successful targeting. Peter, yes sorry my bad my psa was recorded as <0.03 after my RP for 33 months, and then after RT the same lab used 0.00

LynEyre, I need to learn more about post RT nadir, I would be delighted if I had reached some sort of nadir!

I think the biggest hit about these little numbers is the psychological hit especially after good numbers after RP. I Am coming to terms with the next stage on this journey but the feeling of control being taken away is not good.

Thank you all for replying.

Adrian

User
Posted 08 Jul 2021 at 08:40
Update today. I took a year off testing due to my last results staying the same at 0.1 over 6 months. Today my PSA has risen to 0.3.

I'd be interested if anyone has had a similar experience and what my next choices/options maybe. So from 0.1 in August 20 to 0.3 in July 21. I was really hoping it may hold steady, right into full recurrence I guess.. Bit devastated this morning.

User
Posted 08 Jul 2021 at 10:26
Did they target any lymph nodes when you had your salvage RT? Or was it just the prostate bed?

At 0.3 might be worth a PSMA scan and hopefully anything picked up will be targetable with some more RT.

Otherwise 3 monthly tests to get a better idea of the velocity hopefully you will have many years before it hits 5 and you need to start systemic treatment.

User
Posted 08 Jul 2021 at 11:25

Hi Franciji1

They didn't target lymph nodes because they came up clear after RP. I'm going to ask for a scan when I have a video consultation with my consultant. I'm a bit gutted because all my post op numbers etc were excellent, goes to show you never know with this disease! I think I'll feel a bit better once I've spoken to my consultant.
Thanks for your reply

Adrian

User
Posted 04 Aug 2021 at 20:29
UpDate. I had my video consultation today, my oncologist was on annual leave but his replacement was good. He said they’ll wait until my psa hits 2 and then they’ll book a PMSA pet scan. I did an online PSADT calculator and it suggested 9 months. Anyone out there with any experience of what this potentially means for prognosis, I’ve read loads but firsthand experience would be better.

I did ask the young Onco for a worse case scenario, he answered that if it proves to have metastasised it could be as low as 4-5 years. Alarming to say the least!

My post RP pathology was very favourable with negative margins, no evidence of cancer on seminal vesicles and organ confined disease, my stage was T2c and my Gleason score was upgraded to 3+4 from 3+3 My oncologist today said that was all very well but the disease could still have seeded elsewhere before my prostate was removed.

It truly is a disease that doesn’t play to the rules!

Any comments would be greatly appreciated

Thanks

Adj

User
Posted 04 Aug 2021 at 21:40

Adj 

I did reply to you last year, not much has changed, my last PSA was just over 0.6, my histology was, positive margins and extraprostatic extension. The oncologist has different ideas to the nurse he thinks a scan at 2 , 4 or even 8. 

I often see it said, the sooner you start HT the sooner it will stop working. 

Thanks Chris

 

 

User
Posted 04 Aug 2021 at 21:49
Thanks Chris, yes I get that about starting HT

It seems like your rise is relatively slow, that’s got to be good news. I hope mine slows down.. it’s bloody stressful.

All the best and I’ll follow your thread now

Adj

User
Posted 04 Aug 2021 at 22:31
Maybe read my profile ? I’m 54 now and had surgery at 48. My post op psa was 1.5 with multiple lymph spread ( too late ). I rejected SRT as they thought the spread and rising PSA was more lymph based so SRT wouldn’t work. And I didn’t want further grief to my tackle at 48 on a doctors whim. My psadt was always roughly 8 months , but in 4 years Of scanning nothing visible until last 16 months. Eventually gave up and went on HT last February. My psa had risen to 990 and some discomfort was settling in , and scan showed tumours in spine ribs clavicle and various lymph’s enlarged in body. I feel fine now but guessing on a steady decline As soon as my diagnosis went from G9T4N1 to M1 I was told I’d probably have median 3 to 5 yrs.Already had 3 doses of RT to spine and ribs to bolster the HT up. The fear comes and goes. It’s a nasty drawn out disease which takes from you as a person year by year unless you get lucky from the start.

My wishes to you

If life gives you lemons , then make lemonade

User
Posted 05 Aug 2021 at 08:28

Thanks Chris, yep I’ve read your profile before, bloody hell you’ve been (and are going) through it.

I agree, it chips away at you as a person and it’s bloody relentless. I’m at the start of the next phase and definitely not loving it. I’m fit and well atm, never been ill from the disease, it’s the treatments and stress that have caused me problems so far. I’m going to keep on surfing and fishing and enjoying a bbq with plenty of wine while I can, I’ve always lived for the day so no regrets. I truly did appreciate my latest Onco’s honesty which I explicitly asked for, I got tired of being fobbed off with the “it could be” answers. We all need to be able to plan for the future and enjoy the good time we have left.

Keep up the good fight mate, all power to you.

Adj

 
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