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Recurrence 6 years after Robotic Surgery

User
Posted 07 Mar 2022 at 17:20

That’s really good news.

Ido4

User
Posted 19 Jul 2022 at 08:17

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 08:18  | Reason: Not specified

User
Posted 19 Jul 2022 at 10:20

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 11:25

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 11:29  | Reason: Not specified

User
Posted 19 Jul 2022 at 11:32
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 13:05
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 14:46

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 14:59

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 15:38

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 16:17

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 16:55

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 17:39

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 17:55

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 18:40

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 19:07
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 19:13
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 20:00
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 23:32
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 10:26
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 10:33

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 10:35  | Reason: Not specified

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

 
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