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Recurrence 6 years after Robotic Surgery

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User
Posted 28 Aug 2021 at 04:56

As it looks like I will be contributing to this site for a while I thought I had better start my  own thread.

If you want the full history it's in on my profile.

April 2021 well of course the unlikely (according to my Urologist) has happened I got a 0.1 at my annual PSA test at GPs, retest at hospital <0.1, retest August ultra sensetive PSA 0.063 so doubled in 2 years. So looks like it's salvage RT for me after an imminent hip replacement. Current plan is wait 3 months, another usPSA, PSMA scan, if still going up and no hotspots elsewhere it will be 37 sessions of RT to the prostate bed and pelvic in lymph nodes.

User
Posted 30 Aug 2021 at 22:51

After I was discharged by Addenbrookes in 2017 my GP questioned why I was continuing to ask for PSA checks. 'It's five years since your robotic RP and follow-up RT and your PSA is below 2, so you are in the clear, you do not need to worry about prostate cancer any longer" was the gist of his response.

I kind of knew about the possibilty of a recurrence so I persuaded him to let me continue having six-monthly checks. But his reassuring attitude meant that after a while I did not bother to have my psa checked regularly, so it was a shock to discover in May this year that it had jumped to 6.9. My current GP called me to tell me the bad news and insisted on making a hospital appointment as a matter of urgency. By July it had risen to 9.4 and I was informed I had advanced PCa with the likelihood that it has spread from the prostate bed. I now anxiuosly await the onco's verdict on a PET scan I had done a few days ago.

All of which has me wondering, how come GPs can be so dangerously misinformed?

User
Posted 10 Jan 2024 at 08:42
Being referred back to a new consultant in the NHS gets me a 3rd opinion to ponder I guess 😵‍💫 Hopefully it will be consistent with the others!.

My concern as always is I am missing an opportunity for a durable remission, the Lady from the RM was very clear that the research showed zero benefit to going early (8 years??) to SRT so long as My PSA was not > than 0.2 or doubling quickly.

Hopefully when I have updated my username to "oldfrancij1" in 20 years time I will be able to report definitive proof to this wonderful forum.

User
Posted 28 Aug 2021 at 04:56

As it looks like I will be contributing to this site for a while I thought I had better start my  own thread.

If you want the full history it's in on my profile.

April 2021 well of course the unlikely (according to my Urologist) has happened I got a 0.1 at my annual PSA test at GPs, retest at hospital <0.1, retest August ultra sensetive PSA 0.063 so doubled in 2 years. So looks like it's salvage RT for me after an imminent hip replacement. Current plan is wait 3 months, another usPSA, PSMA scan, if still going up and no hotspots elsewhere it will be 37 sessions of RT to the prostate bed and pelvic in lymph nodes.

User
Posted 29 Aug 2021 at 14:40
The slow advance of PCa in some cases can give a false sense that the disease has been eradicated and where recurrence has happened it can be devastating, particularly as we know secondary and other further down the line treatments may have to be initiated and generally these are not so successful as primary treatment. So although one should not continually worry whether further treatment might be required, (often it is not), you should not assume it will never return even years later as a number of our members can testify.
Barry
User
Posted 19 Nov 2021 at 05:31

Sorry to hear this.  Been fighting this thing for 5 years now and psa is consistently less than 0.006.  But that's after surgery, salvage RT and HT.  Next psa test in February.  Don't think I'll ever be totally confident it's gone.

User
Posted 06 Mar 2022 at 07:32
PSMA scan was clear, the CT part highlighted something on my ribs but this has been deemed normal wear and tear.

Next PSA test in 4 months.

User
Posted 20 Oct 2023 at 18:57
Chris j you are are my ultimate standard bearer for the don't fxxk your life up just because a DR says so! You have given me the courage to both question and decide my own treatment path.

User
Posted 04 May 2024 at 00:37
Back in the good old NHS for my ongoing care as I have retired from the job with private health care and it's time for my 3 month check up.

So I was a little worried when despite being referred back to the NHS last year I didn't receive a letter acknowledging this for 2 months and that said it would be 26 weeks before I could have an appointment and I may wish to go elsewhere?? Not sure where else you can go in the UK if you don't have private cover??

Anyway I should not have worried after a phone call to chase it up an appointment with a Professor G duly arrived.

The appointment day arrived and I was pleased to get seen by the Prof himself and I had an unrushed consultation when he quizzed me on my treatment to date. He was particularly interested in the second opinions I had had from the Royal Marsden and we discussed the results of the Radicals trial and the logic for having 0.2 as the cut off for salvage therapy. He also confirmed if I hit 0.2 they would do further tests including PSMA PET to re stage me.

So the big question what was my PSA? Well I just got called by the prostate specialist nurse and she said 0.12 (only 2 decimal places in this trust with 0.03 as the undetectable threshold).

Allowing for roundings it's the same as last time (0.117) I will take that for now and hopefully the next one in 3 months will be the same!

So far life in the NHS lane seems pretty good, in fact the only difference so far is no free coffee but there was free parking for cancer patients...

User
Posted 04 May 2024 at 09:51

Well I retired from the paid job and have taken my pension so I am lucky that I don't need to worry about money too much!

I am now a full time farmer so that keeps me busy and is very rewarding mentally and physically if not financially 😂😂

To be honest I thought I would miss some aspects of my old job but it turns out I don't so that is great!

Edited by member 04 May 2024 at 09:53  | Reason: Not specified

User
Posted 28 Aug 2021 at 15:14

Hi,  I hope it settles.  I'm 5 years in December so it sent a shudder down me to read it.  Although your sensitive psa tests have kept you on edge for some time.

You've got salvage RT pretty quickly which is better than many.

If it was me I'd think they'd hold salvage until it got over 0.1 as my tests are only to <0.05 so a trend isn't known.  That's why I'd prefer to know to 0.03.  The rate of climb to 0.06 would be obvious from <0.03 whereas for me it might have been 0.049 last time, i.e. less than <0.05.

Good luck with your next psa test,
Peter

User
Posted 03 Sep 2021 at 14:00
So took the advice of the great sage himself (Bolinge) and got a second opinion from the RM. Very nice RT Oncologist answered all my questions and has recommended I don't consider further treatment until 0.1 at least. So I will stick to quarterly usPSA tests for now, hold off the PSMA scan and see where it goes.

The ONCO further reassured me that all the current trial evidence for my Stage, doubling rate, Gleason etc was that I do not have to rush for treatment. Obviously if it was a G8+ that would be different.

User
Posted 03 Sep 2021 at 16:11

That seems a sensible decision given the long PSADT and PSA below 0.1. If things change you can deal with it then.

My recurrence went straight to 0.3 and then 0.7 in a very short time with PSADT of 1.2 months so it had to be treated aggressively.

Best wishes,

Ido4

User
Posted 03 Sep 2021 at 18:26

Francij 

Sounds like a plan. Hope you can avoid SRT for a long time. 👍

Thanks Chris

User
Posted 15 Feb 2022 at 14:59

Franci, none of us like any rise but overhall a very slow rise since 2015, which is better than a fast rise.  Hope the scan is beneficial. 

Thanks Chris

User
Posted 17 Feb 2022 at 15:08
Ga68 PSMA scan booked for end of Feb, will keep this site posted as what if anything it finds...
User
Posted 06 Mar 2022 at 09:02
Excellent news friend. Long May it continue for you 👍👌
User
Posted 06 Mar 2022 at 09:14
👍Good news
User
Posted 06 Mar 2022 at 09:26

Great news 👍🏽

User
Posted 06 Mar 2022 at 11:34

Francij1, good to hear.

Thanks Chris

 

User
Posted 07 Mar 2022 at 16:20

That’s really good news.

Ido4

User
Posted 19 Jul 2022 at 10:32
Honestly franci, I think you are between a rock and a hard place - would they agree to a different type of scan at 0.2 or 0.5?

Don't be lulled into over-confidence re the G6; although extremely rare, we have had someone on here recently with a G6 which had spread. I can't remember who at the moment but will trawl back and see if I can find them. However, your stats are typical of remains in the prostate bed so if / when you decide that you are ready, salvage RT has a good chance of being successful.

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

User
Posted 19 Jul 2022 at 17:40

I worked out the doubling time about the same as you have. So it will take 3 year to get to 1, another 3 to get to 10, and another 3 to get to 100. As Barry says these are hardly precise and it may accelerate, but in 10 years you will have a PSA of over 100.

I don't think you can say what PSA figure is the one which determines whether you live or die. If you had a PSA of 1000 but it was all happily sitting in the prostate bed theoretically you don't have a problem.

In reality I think if you ignore this you will probably live another 10 years and then things will be really messy. If you have a good QoL now, maybe you should think about Active Surveillance; you might manage five years before things look scary, then get treated, have a bit of a miserable two years in your late 60s rather than your early 60s. And hope whatever treatment you have pushes the next recurrence twenty years down the line.

Some people say if it needs doing I may as well get it done now, but my philosophy is that, in the next five years you could get run over by a bus, have a stroke, a heart attack or a whole host of other bad things. So whilst life is good you may as well enjoy it and not spend two years on HT, but as the risk of PC increases and as your quality of life inevitably declines due to aging, and assuming you haven't bypassed the need for treatment by dying in the meantime, then yes go for treatment at the last possible moment before the cancer becomes incurable (I'd like to think that might be five years time).

Of course you and your oncologist need to make the decision. If I were the onco I would be pushing for ASAP, let's get this sorted, but if I were the patient for the reasons above I would be looking to hold off as long as possible.

 

 

Dave

User
Posted 19 Jul 2022 at 19:00
Perhaps that's the problem franci - you need more French cheese, wine and cycling!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2022 at 12:57
My friend Raiden who used to post on here ( great mates now ) had 4 consecutive rises from 0.05 and eventually hit 0.14. His Onco wanted to act on this , but Raiden like me was huge on QOL. His psa has stalled at this level for around 1 1/2 yrs now. I know you know that I’d wait …… in fact I’ve never even had a psa as low as mine is now at 0.77.

Best wishes brother

User
Posted 09 Aug 2022 at 16:38

Francij, I was surprised when my oncologist said a couple of weeks ago the salvage RT was still given as an educated guess.  About 6 weeks ago the consultant radiologist said they had lowered the criteria for PSA prior to PSMA scans from 0.5 to 0.3 at our hospital.

Prior to my SRT at 0.2  I asked if the SRT could be delayed to sort stricture out, my urologist said he would be criticised for delaying salvage RT beyond a PSA of 0.4, I started at 0.27.

I don't know how long it takes a lymph node tumor to grow but mine is about 8mm, if that is the only source of the my 1.6 PSA  could it have possibly been pick up before SRT five years ago. Presumably something was in the bed because my PSA did drop after SRT.

Thanks Chris 

 

 

 

User
Posted 09 Aug 2022 at 19:49

Hi Francij1, your PSA seems to be rising very slowly. I think if or when it rises to 0.2 I would be looking to treat it with SRT. The evidence around SRT seems to show that outcomes are better and more sustained with early intervention at or before a PSA of 0.2. BCR after prostatectomy is very difficult for medics to deal with definitively. These articles summarise a couple of studies into BCR. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8833698/

https://www.karger.com/Article/Fulltext/481438

Ido4

User
Posted 18 Aug 2022 at 00:41

Originally Posted by: Online Community Member

It's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?

I had 15 doses of RT on NHS. For the first week they checked every day. In the second and third week they only checked one or twice. I asked why and they said, it didn't move in the first week so we don't need to check it as often.

I really doubt they would have done it differently if private. Might have got tea and biscuits though.

Dave

User
Posted 18 Aug 2022 at 13:50

"I also asked him what benefit private RT offered over the NHS and he said no "technical benefit" IE it's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?"

Presumably this is true at the hospital your onco works at. 

John had his RT done privately but the private health care provider is a company within the NHS hospital and wholly owned by the Trust. All profits are ploughed back into their NHS oncology service and research team which appealed to my social conscience! The only difference it made was that John saw the onco every week for a catch up. 

Edited by member 18 Aug 2022 at 13:55  | Reason: Not specified

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

User
Posted 18 Aug 2022 at 16:42

I had my 20 SRT fractions on the NHS. I was scanned every day after being lined up with my tattoos. 

Regards, 

Kev.

User
Posted 27 Mar 2023 at 23:09

Franci, great news, really pleased for you. Why does it drop , who knows. Long may it last.

Thanks Chris 

User
Posted 27 Mar 2023 at 23:45

More good news.

Thanks for sharing your diet, it's interesting.    Fasting is getting a lot of positive comment lately.  16/8 is a tough one. 14/10 is fairly easy.  But which, if any, of the measures help?  It sounds like you're on a winner, too good to change.

 

 

 

User
Posted 28 Mar 2023 at 12:33

Great news Francji and long may it continue for you 🤞can’t shed any light on the decreases!

User
Posted 28 Mar 2023 at 15:50

Great news. I can’t explain the drop in PSA either! 

Ido4

User
Posted 28 Mar 2023 at 17:25
Great news frankij. We mostly think no rise is as good as you can hope for post RP but you've proved otherwise. I wish I knew why.

I am also on a fasting diet its the don't eat while sleeping one.

Cheers

Bill

User
Posted 20 Oct 2023 at 17:10
5.5 months after the previous PSA and my latest reading is 0.11 so the downward trend has definitely stopped after 1 reading 😵‍💫.

Back on 3 monthly testing. Onco says no treatment considered until 0.2 so the Savage RT debate appears to have gone full circle. He also said any RT would need 2 years of bicalutimide OR 6 months of the Zoladex equivalent. He said recent research supported waiting until 0.2 AND the 2 or 6 month options for HT along with prostate bed AND pelvic lymph node radiation.

I asked about PSMA scan and he said no point until 0.5 and that would risk missing the treatment window.

Anyway 3 months to think about what I want to do.

Life is really good at the moment so seriously thinking about waiting until it's findable on a scan.

User
Posted 20 Oct 2023 at 18:22
Sorry to hear this. It is a poser for sure. You know my view on it all. A good friend Raiden who used to post on here had his RP same month and year as me. His psa went up 4 times but minutely. Like me he was all QOL and wanted to hold off as long as he could. Eight years later he has hovered around 0.2 with no climbs. And no RT or HT which can bring a raft of issues as you know. But it’s a tough choice and you have to stick with it. My psa got up to 990 or over and I’m still living the dream after delaying invasive treatments. Good luck with what you decide. It’s tough
User
Posted 22 Oct 2023 at 13:53

I think if Robs had been increasing at a slower pace we would have been tempted to wait to see what was going on. With him being G9 and PSA doubling every 3 months we thought it best to opt for SRT at this point even though PSMA pet scan was clear. 

The one thing with PCa is I’m not sure we ever know if we’re making the ‘right’ decisions just have to go with what you thing is best for you at each point and no regrets 🙏🏼

Fingers crossed for a good result for you in 3 months 🤞🏼

User
Posted 10 Jan 2024 at 01:44
Ah, sorry franci ... on the upside, you are aware that John's goes up to 0.11 and then back down to <0.1 depending on the time of year. If the RM are saying 'wait for 0.2' I guess that must be sound advice?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Feb 2024 at 11:21
I think it's because I haven't got to 0.2 yet, I am also a lot younger than yourself (nearly 20 years).

So the oncologists need to balance risks of over treatment V under treatment. The current risk "cut off" is 0.2. So prior to 0.2 and slow doubling time (presently >2years) I have been told it's safer to leave it alone.

In your case you are >0.2 and approx 6 months DT with a detectable recurrence on a scan. I think I would be thinking about just blasting the node without any HT. This would be low risk and might deliver a cure while leaving all the other options available later.

User
Posted 14 Feb 2024 at 13:02

Pca2015, I had surgery in 2014 followed three years later by SRT to the prostate bed. Following a rise after SRT my oncologist was going to wait until my PSA was 2,4 or even 10. With more widespread use of PSMA scans the plan changed and at 1.4 ,I had a scan and SABR treatment to a pelvic lymph node, following another rise to 6.2, I had another PSMA scan and more SABR treatment to a second pelvic lymph node and six months of bicalutamide. 

The PSA after the last treatment went from 0.32 to 0.44, the plan now is another scan if the PSA hits 1 or the doubling time goes below three months.

Thanks Chris 

User
Posted 19 Aug 2024 at 20:21
3 months on another PSA test and phone call with the oncology nurse, result: 0.12 same as last time..

Booked in again for 3 months time.

User
Posted 20 Dec 2024 at 04:37

Originally Posted by: Online Community Member
Does the forum still think hold fire on salvage RT is the way to go?

At some time, I fully expect to be in a similar situation to you francij. I would hold fire on salvage RT until at least 0.2.

It seems so sad that we have to spend so much time thinking about such bloody miniscule numbers. It's like our lives revolve about a decimal point.

Good luck mate.👍

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User
Posted 28 Aug 2021 at 15:14

Hi,  I hope it settles.  I'm 5 years in December so it sent a shudder down me to read it.  Although your sensitive psa tests have kept you on edge for some time.

You've got salvage RT pretty quickly which is better than many.

If it was me I'd think they'd hold salvage until it got over 0.1 as my tests are only to <0.05 so a trend isn't known.  That's why I'd prefer to know to 0.03.  The rate of climb to 0.06 would be obvious from <0.03 whereas for me it might have been 0.049 last time, i.e. less than <0.05.

Good luck with your next psa test,
Peter

User
Posted 29 Aug 2021 at 14:40
The slow advance of PCa in some cases can give a false sense that the disease has been eradicated and where recurrence has happened it can be devastating, particularly as we know secondary and other further down the line treatments may have to be initiated and generally these are not so successful as primary treatment. So although one should not continually worry whether further treatment might be required, (often it is not), you should not assume it will never return even years later as a number of our members can testify.
Barry
User
Posted 30 Aug 2021 at 22:51

After I was discharged by Addenbrookes in 2017 my GP questioned why I was continuing to ask for PSA checks. 'It's five years since your robotic RP and follow-up RT and your PSA is below 2, so you are in the clear, you do not need to worry about prostate cancer any longer" was the gist of his response.

I kind of knew about the possibilty of a recurrence so I persuaded him to let me continue having six-monthly checks. But his reassuring attitude meant that after a while I did not bother to have my psa checked regularly, so it was a shock to discover in May this year that it had jumped to 6.9. My current GP called me to tell me the bad news and insisted on making a hospital appointment as a matter of urgency. By July it had risen to 9.4 and I was informed I had advanced PCa with the likelihood that it has spread from the prostate bed. I now anxiuosly await the onco's verdict on a PET scan I had done a few days ago.

All of which has me wondering, how come GPs can be so dangerously misinformed?

User
Posted 03 Sep 2021 at 14:00
So took the advice of the great sage himself (Bolinge) and got a second opinion from the RM. Very nice RT Oncologist answered all my questions and has recommended I don't consider further treatment until 0.1 at least. So I will stick to quarterly usPSA tests for now, hold off the PSMA scan and see where it goes.

The ONCO further reassured me that all the current trial evidence for my Stage, doubling rate, Gleason etc was that I do not have to rush for treatment. Obviously if it was a G8+ that would be different.

User
Posted 03 Sep 2021 at 16:11

That seems a sensible decision given the long PSADT and PSA below 0.1. If things change you can deal with it then.

My recurrence went straight to 0.3 and then 0.7 in a very short time with PSADT of 1.2 months so it had to be treated aggressively.

Best wishes,

Ido4

User
Posted 03 Sep 2021 at 18:26

Francij 

Sounds like a plan. Hope you can avoid SRT for a long time. 👍

Thanks Chris

User
Posted 04 Sep 2021 at 07:17

Originally Posted by: Online Community Member
So took the advice of the great sage himself (Bollinge)

Flattery indeed!

Thanks, John.

User
Posted 04 Sep 2021 at 07:27
Sage and onion 🤣🤣🤣
User
Posted 19 Nov 2021 at 01:23
So latest PSA result 0.074, ONCO wants another PSA in 3 months, apparently he has gone off the idea of SRT and PET scans below 0.1 which means his approach now aligns with the second opinion I had from the Royal Marston.

While I find the alignment reassuring, the relentless PSA growth albeit from a low level is worrying is leaves me in no doubt my cancer is growing.

User
Posted 19 Nov 2021 at 05:31

Sorry to hear this.  Been fighting this thing for 5 years now and psa is consistently less than 0.006.  But that's after surgery, salvage RT and HT.  Next psa test in February.  Don't think I'll ever be totally confident it's gone.

User
Posted 15 Feb 2022 at 06:11
PSA now 0.076 so Basically unchanged from 3 months ago, without doubt good news.

ONCO says he is sure I will need RT "one day" but RADICALS proves no benefit going early (7 years this year?) so retest in 3 months.

I then tell him my private insurance will finish in May because I am retiring. So then he says maybe get it treated now because Genesis is much better than NHS. But he also didn't recommend paying the 20k myself if I wait until PSA goes over 0.1 ie after May because it's not worth it??

Now I find this inconsistent and hence a concern it certainly seems to indicate a conflict of interest somewhere. My logic says there is an optimum treatment path and this may or not be private but it should not make a difference if the cash comes from insurance??

So I challenged him with a 3rd option (thinking of Ulsterman) get a PSMA scan to confirm my staging (not been restaged for 7 years). He says good idea, so it's off to London for a scan and if it finds anything zap it before my insurance runs out. If it doesn't back to take my chances with the NHS in 3 months.

Thoughts??

User
Posted 15 Feb 2022 at 14:59

Franci, none of us like any rise but overhall a very slow rise since 2015, which is better than a fast rise.  Hope the scan is beneficial. 

Thanks Chris

User
Posted 17 Feb 2022 at 15:08
Ga68 PSMA scan booked for end of Feb, will keep this site posted as what if anything it finds...
User
Posted 17 Feb 2022 at 22:03
🤞
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2022 at 07:32
PSMA scan was clear, the CT part highlighted something on my ribs but this has been deemed normal wear and tear.

Next PSA test in 4 months.

User
Posted 06 Mar 2022 at 09:02
Excellent news friend. Long May it continue for you 👍👌
User
Posted 06 Mar 2022 at 09:14
👍Good news
User
Posted 06 Mar 2022 at 09:26

Great news 👍🏽

User
Posted 06 Mar 2022 at 11:34

Francij1, good to hear.

Thanks Chris

 

User
Posted 07 Mar 2022 at 16:20

That’s really good news.

Ido4

User
Posted 19 Jul 2022 at 07:17

So my latest USPSA is 0.100, onco says now is the time to blast it with SRT.

My thoughts:

Could I just stop all treatment and PSA testing and chance it? After all it's a confirmed G6 tumour so shouldn't ever kill me?

What is the significance of the negative PSMA PET? Does that bode well or badly for a durable remission?

Radical treatment for this disease has nearly killed me once I am slightly petrified of ruining my currently perfect life trying to treat something that is unlikely to cause me significant issues for years...

What would this forum do?

Edited by member 19 Jul 2022 at 07:18  | Reason: Not specified

User
Posted 19 Jul 2022 at 09:20

Hi,

You mention bicalutimide in your bio.. does that mean HT will run in parallel with your SRT treatment?

I'm now halfway through SRT but without the HT which makes things slightly more palatable. Like you, I want to preserve my happy life too.

Good luck, 

Kev.

 

User
Posted 19 Jul 2022 at 10:25

Yes the onco says 2 years bical, it has been shown to improve outcomes but I do wonder how much of this is just "early HT" effect that you would get anyway if the SRT failed and you eventually end up on HT..

Hows the SRT going keV?

Edited by member 19 Jul 2022 at 10:29  | Reason: Not specified

User
Posted 19 Jul 2022 at 10:32
Honestly franci, I think you are between a rock and a hard place - would they agree to a different type of scan at 0.2 or 0.5?

Don't be lulled into over-confidence re the G6; although extremely rare, we have had someone on here recently with a G6 which had spread. I can't remember who at the moment but will trawl back and see if I can find them. However, your stats are typical of remains in the prostate bed so if / when you decide that you are ready, salvage RT has a good chance of being successful.

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

User
Posted 19 Jul 2022 at 12:05
I can wait, at the moment I still have private cover so decisions are all largely mine.

Having done the maths my doubling rate of just over a year means I will be approaching a PSA of 100 in 10 years time which makes me think I might as well get it over with..

User
Posted 19 Jul 2022 at 13:46

Originally Posted by: Online Community Member

Yes the onco says 2 years bical, it has been shown to improve outcomes but I do wonder how much of this is just "early HT" effect that you would get anyway if the SRT failed and you eventually end up on HT..

Hows the SRT going keV?

 

SRT is okay so far, with 11 of 20 completed as of today. Maybe a little more bladder urgency than usual and softer stools, but that could be the hot weather or just me looking for problems. Had a Q&A call with the treatment team yesterday reiterating likely side effects from here on for the next 4-6 weeks or so. Ironic that I went down the surgery route because I didn't fancy RT.

As Lyn says.. between a rock and a hard place. 

Cheers, 

Kev.

User
Posted 19 Jul 2022 at 13:59

Originally Posted by: Online Community Member
I can wait, at the moment I still have private cover so decisions are all largely mine.

Having done the maths my doubling rate of just over a year means I will be approaching a PSA of 100 in 10 years time which makes me think I might as well get it over with..

You can't count on an even progression with PCa.  In many cases, perhaps most, where there is some PCa cells,   PSA tends overall to accelerate over time.  You can't just make long term assumptions.  The point at which salvage RT is administered needs careful discussion with your consultant based on your individual case and histology and also the way you see it.

Barry
User
Posted 19 Jul 2022 at 14:38

Hi kev so you get 20 fractions, my onco seems the complete opposite of yours and says 30+ for me.  Wish someone could explain these variations... Mine has also said whole pelvis Inc lymph nodes???  

Another opinion just booked! I will see what they say..

User
Posted 19 Jul 2022 at 15:17

Hi, yes I'm having 20 to the prostate bed due to rising PSA and a margin found post op. I have to admit though.. I don't recall if that covers lymph nodes which were apparently clear at the time. 

According to the Radiographer, and if Iunderstand it correctly, I'm getting 2.6 Gray per day making a total of 52 Gray.

User
Posted 19 Jul 2022 at 15:55

Sorry to hear you have reached the rock/hard place. Im sure that I'll be there sooner or later. In answer to your question, if it were me, I would take the treatment they advise. That is based on the assumption (true in my case) that they know what they are doing because they are experts in their field, and their advice will be dispassionate.

User
Posted 19 Jul 2022 at 16:39

I’m sorry to read this Franci. It sounds like you are facing SRT ultimately, your choice of course. I had 20 fractions of SRT totalling 55 Grays in 2017. The SRT targeted recurrence in the prostate bed and seminal vesicle remnants plus a beam spread over whole pelvis. 

Ido4

User
Posted 19 Jul 2022 at 16:55

Francij1, difficult choice but at your age I don't think doing nothing is the really the right thing. I had 66 gy in 33 sessions but it only took three years for me to go from 0.03 to 0.27.

Hope it works out what ever you do.

Thanks Chris 

User
Posted 19 Jul 2022 at 17:40

I worked out the doubling time about the same as you have. So it will take 3 year to get to 1, another 3 to get to 10, and another 3 to get to 100. As Barry says these are hardly precise and it may accelerate, but in 10 years you will have a PSA of over 100.

I don't think you can say what PSA figure is the one which determines whether you live or die. If you had a PSA of 1000 but it was all happily sitting in the prostate bed theoretically you don't have a problem.

In reality I think if you ignore this you will probably live another 10 years and then things will be really messy. If you have a good QoL now, maybe you should think about Active Surveillance; you might manage five years before things look scary, then get treated, have a bit of a miserable two years in your late 60s rather than your early 60s. And hope whatever treatment you have pushes the next recurrence twenty years down the line.

Some people say if it needs doing I may as well get it done now, but my philosophy is that, in the next five years you could get run over by a bus, have a stroke, a heart attack or a whole host of other bad things. So whilst life is good you may as well enjoy it and not spend two years on HT, but as the risk of PC increases and as your quality of life inevitably declines due to aging, and assuming you haven't bypassed the need for treatment by dying in the meantime, then yes go for treatment at the last possible moment before the cancer becomes incurable (I'd like to think that might be five years time).

Of course you and your oncologist need to make the decision. If I were the onco I would be pushing for ASAP, let's get this sorted, but if I were the patient for the reasons above I would be looking to hold off as long as possible.

 

 

Dave

User
Posted 19 Jul 2022 at 18:07
Calculating doubling time is not very reliable until you have 3 readings above 0.1 so the next couple of tests may answer your question anyway?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2022 at 18:13
Interestingly it seems to jump over the summer then settle down. Before you ask lyn I don't cycle or go to France!

Second opinion booked, will let you all know what they say.

Thanks for all the feedback your thoughts all mirror my my own...

User
Posted 19 Jul 2022 at 19:00
Perhaps that's the problem franci - you need more French cheese, wine and cycling!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jul 2022 at 22:32
So the dilemma continues, second opinion at the RM.

Told all the uspsa readings are all basically 0.1 and until I get readings above 0.1 they would not recommend salvage RT. They also said to check the test result as they my have swapped to standard PSA hence the 0.1 result (rather than 0.095 or 0.135).

The RM consultant also said there was some important data from the Radicals trial due in September that would likely change treatment protocols for Hormone therapy for SRT.

So not doing anything for another 3 months!

User
Posted 29 Jul 2022 at 09:26
Reporting to one dp only applies up to 0.1 - a result of 0.135 would be reported as 0.135 or 0.14 and would never be rounded down.

Use of 1dp is routine from 1.0 to 9.9 but most labs then report 10.0 and above just as whole numbers

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

User
Posted 29 Jul 2022 at 09:33

PS I hate to say it franci but it is now 1 year and 3 months since you got a 0.1 and the sky hasn't fallen in yet. If you aren't careful, you are going to waste your life worrying about a recurrence that never actually happens.

Edited by member 29 Jul 2022 at 09:35  | Reason: Not specified

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

User
Posted 29 Jul 2022 at 12:15
Fully aware of that Lynn if I had consistent advice from Oncologists I wouldn't get so stressed about it all.

My local Onco says I have a recurrence and must get it zapped Inc lymph nodes asap.

The RM Onco says wait.

I am taking the RMs advice, hopefully I won't regret it!

User
Posted 29 Jul 2022 at 14:34
I share your frustration x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2022 at 12:16
So my Onco that wants to treat me at 0.1 (confirmed latest result is 0.100) is pushing me to attend a face to face consultation next week to talk about treatment plan.

I was happy with my second opinion from the RM saying OK to wait another 3 months.

Lots of other threads on here seem to align with RM position (ok to wait, some threads now even say wait until 0.4??).

I think I will attend and tell him about the second opinion and see what his reaction is? What does this forum think? BTW this is all private treatment and I must admit I am concerned about financial incentives to treat that may not be in my benefit.

User
Posted 09 Aug 2022 at 12:57
My friend Raiden who used to post on here ( great mates now ) had 4 consecutive rises from 0.05 and eventually hit 0.14. His Onco wanted to act on this , but Raiden like me was huge on QOL. His psa has stalled at this level for around 1 1/2 yrs now. I know you know that I’d wait …… in fact I’ve never even had a psa as low as mine is now at 0.77.

Best wishes brother

User
Posted 09 Aug 2022 at 16:38

Francij, I was surprised when my oncologist said a couple of weeks ago the salvage RT was still given as an educated guess.  About 6 weeks ago the consultant radiologist said they had lowered the criteria for PSA prior to PSMA scans from 0.5 to 0.3 at our hospital.

Prior to my SRT at 0.2  I asked if the SRT could be delayed to sort stricture out, my urologist said he would be criticised for delaying salvage RT beyond a PSA of 0.4, I started at 0.27.

I don't know how long it takes a lymph node tumor to grow but mine is about 8mm, if that is the only source of the my 1.6 PSA  could it have possibly been pick up before SRT five years ago. Presumably something was in the bed because my PSA did drop after SRT.

Thanks Chris 

 

 

 

User
Posted 09 Aug 2022 at 19:49

Hi Francij1, your PSA seems to be rising very slowly. I think if or when it rises to 0.2 I would be looking to treat it with SRT. The evidence around SRT seems to show that outcomes are better and more sustained with early intervention at or before a PSA of 0.2. BCR after prostatectomy is very difficult for medics to deal with definitively. These articles summarise a couple of studies into BCR. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8833698/

https://www.karger.com/Article/Fulltext/481438

Ido4

User
Posted 17 Aug 2022 at 23:52
So I had my Onco consultation yesterday that he had insisted on to talk about planning for RT and great news (I think!) He has changed his mind and the consultation was almost word for word what the 2nd opinion said ie no benefit going before 0.2. So next PSA 3 months.

He went through why he would treat my pelvic lymph nodes and why this wouldn't be a problem (no lymph nodes removed at surgery). He also said surgical lymp node removal would have meant prostate bed only RT because of the danger of lymphoedema.

I also asked him what benefit private RT offered over the NHS and he said no "technical benefit" IE it's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?

User
Posted 18 Aug 2022 at 00:41

Originally Posted by: Online Community Member

It's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?

I had 15 doses of RT on NHS. For the first week they checked every day. In the second and third week they only checked one or twice. I asked why and they said, it didn't move in the first week so we don't need to check it as often.

I really doubt they would have done it differently if private. Might have got tea and biscuits though.

Dave

User
Posted 18 Aug 2022 at 13:00

I had a scan before all 20 treatments to make sure they had me n the right position.

I was treated on the NHS. 

Ido4

User
Posted 18 Aug 2022 at 13:47
Varies between hospitals and treatment versions. If you have the gold seeds, you are in effect scanned every day. If you just have the tattoos, you may be scanned daily or weekly, or daily at the start of the treatment and less frequently once the RT staff are confident about your ability to keep bowel and bladder empty / full. Someone with a lot of gas problems may end up being scanned every day.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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