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Recurrence 6 years after Robotic Surgery

User
Posted 30 Nov 2022 at 18:57

That's good psa news.   

How come they gave you a PSMA scan at 0.08 and you're expecting Salvage RT with a rise above 0.1.  They were very against the suggestion of a psma scan or referring me to an onco when mine went to 0.09 6 months ago.  It's now 0.08 anyway but I'm thinking that the onco will only be at 0.12 at least.

All the best, Peter

User
Posted 30 Nov 2022 at 19:50

Originally Posted by: Online Community Member

That's good psa news.   

How come they gave you a PSMA scan at 0.08 and you're expecting Salvage RT with a rise above 0.1.  They were very against the suggestion of a psma scan or referring me to an onco when mine went to 0.09 6 months ago.  It's now 0.08 anyway but I'm thinking that the onco will only be at 0.12 at least.

All the best, Peter

Because the onco originally wanted me to "prepare" for salvage therapy at 0.076. I said not without a PSMA scan which he agreed to. The scan found nothing but in the time taken to have it research was published that said no harm waiting until 0.2.

As to how I have private medical cover so it's basically by negotiation. I remember Ulsterman getting a PSMA scan at 0.02 and it changed his treatment.

 

User
Posted 01 Dec 2022 at 16:29

Yes Ulsterman is a good example. A psma scan finding something at 0.02 is miraculous good fortune. 

If necessary I'll pay for a scan around 0.2 I think, I'm at 0.08 and still with Urology.  You could be some time from SRT, as I might be, if you're waiting to 0.2.

User
Posted 27 Mar 2023 at 22:52
4 months on latest PSA 0.086 well I am now truly shocked and relieved the previous small drop has now become a full 0.01 reduction. After 7 years of continuous PSA growth and increasing numbers of PSA checks my PSA has dropped 15% in 12 months.

The Onco has suggested I move 6 monthly checks. I will take that.

So 2 years ago it was only my choice to postpone salvage therapy until after my hip replacement and then getting a second opinion that prevented me getting RT.

So question is why is it going down? The only change I have made to lifestyle in 18 months is moving to carb avoidance 5 days per week and committing to a 16/8 fasting (no breakfast) regime. This has resulted in losing 10kg but my weight has been stable over the last PSA test period.

I eat meat and fermented dairy with all meals + leafy veg and lots of fruit and nuts. I also drink to much!

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 18:20

Oh Heck, you're my flag bearer in the 0.09 group.  Although there's Lyn's husband as well.

What they said to you is what they said to me except no Oncologist as yet.. I intend to try for a paid psma just before 0.2 as I guess it might be higher by the time its done. 0 5 is too high in my opinion.

I keep thinking my time round 0.09 might be coming to an end but it went up to 0.1 so might go down again, as might yours.

 

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 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 20 Oct 2023 at 19:55

I've just checked your profile and PSA readings. It has taken a long time to get to 0.11 . As I often say to people on this site, don't be in a hurry to do anything, if your lucky you'll get run over by a bus before the prostate cancer gets you.

Dave

User
Posted 20 Oct 2023 at 23:06

Originally Posted by: Online Community Member


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

.

As you know I had salvage RT three years after surgery based on" an educated guess", it would be interesting to see what percentage of guys remained cancer free after the "educated guess SRT " to the prostate bed. You could perhaps argue that my window of successful treatment passed because I was refused a PSMA scan.

There was some research posted on here that suggested SRT treatment before 0.25 was the way to go.

Thank Chris 

Edited by member 20 Oct 2023 at 23:07  | Reason: Spelling

User
Posted 22 Oct 2023 at 00:44
Pah! John was 0.11 again in the Summer and it usually drops so I am expecting it to do so again when next tested in November. Up & down, up & down ... <0.1 to 0.11 and back. We have never stopped doing 3 monthly testing though even though it is nearly 14 years since!

Wait to see what next test comes back as before exerting yourself too much with the 'what next'. If it does rise, I am not sure I would want to wait for 0.5 - private scan and salvage plan asap in my book! Also, if you did get to that stage and did need RT, I am a bit bemused by his 2 years bical statement (surely that can only be his personal preference?) but it seems to me that 6 months injections is far, far, far more enticing than 2 years of evil bical.

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

User
Posted 22 Oct 2023 at 09:34
Thanks Lyn, great to have you back hope it was a great holiday and the family shenanigans didn't spoil it..
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 09 Jan 2024 at 18:47
So latest PSA 0.117 up from 0.110 3 months ago. My last appt with the private oncologist and the last ultra sensitive PSA from Wolverhampton New Cross. Been referred back to the NHS at Shrewsbury for follow up.

Everyone is still saying do nothing until 0.2 Inc the second second opinion I had from the Royal Marsden (Thought I might as well cane the private medical while I could).

Last day of paid employment 31 January. Not sure when my next PSA will be yet.

User
Posted 09 Jan 2024 at 19:50

Franci, if I am right your are now eight years since RARP. I was told after surgery my PSA could settle at 0.1 and they had many patients at that level. 

In my case the rise in my PSA as always dropped after treatment but the overall trend has been up. 

Hope you can find a solution you are comfortable with.

Thanks Chris 

 

 
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