I think you are overthinking or working yourself into a panic. Why are you assuming that the cancer is suppressed rather than killed? If you are concerned that your PSA isn't low enough, you have misunderstood what to expect of PSA readings post-RT - your PSA readings are excellent. In response to your questions:
1 With my original diagnosis is it likely the cancer will return?
With any treatment (radiotherapy, surgery, focal treatments) there is a risk of the cancer returning but they wouldn't have given you the RT if they didn't believe it was curable
2 If so, in what timescale, 6 months? a year? 2 years?
No one would be able to say - my dad's recurrence was about 15 years after his treatment but his PSA is climbing so slowly that he has still not needed any further treatment 7 years after the recurrence.
3 Has anyone, having finished Zolodex treatment and been on 6 monthly PSA tests, then moved, at their request, to 3 monthly PSA tests ?
There is generally no point going to 3 monthly testing as the oncologist wouldn't see you until you got to 2.02 anyway. However, there is no harm in asking your GP for 3 monthly tests starting 3 months after the last injection runs out (so 4 months from now).
4 Is an increase PSA to 2.1 a general yardstick to indicate the cancer has returned?
Biochemical recurrence is defined as 2.0 plus your lowest reading so 2.02
5 If and when, the cancer returns what further treatment can I expect? - another CT scan ?, Radiation - Not allowed ?, Zolodex injections for another say 2-3 years? Any other treatment?
Lifelong HT - possibly with chemotherapy or a new generation additional hormone
Edited by member 04 Dec 2022 at 01:08
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
If you like reading tea leaves, this site is quite nice
https://prostate.predict.nhs.uk/tool
Put in your diagnosis and it shows you your percent chance of living a certain number of years, without cancer, with cancer untreated, with cancer radically treated. If you look at the curves and then at the 50% line the number of years where they cross is your median life expectancy. You will see that this is about 14 years for a 73 year old without cancer, about 11 years if you had "conservative" (no) treatment, and about 12.5 years treated as you were.
The fact that on average radically treated men still die 1.5 years earlier than, cancer free men, suggests that in about 50% cases cancer will return. So none of us on this forum should kid ourselves that we are now cancer free. We might be, but we will only know for certain when we die of something else.
So in your case you can assume either you are cured or assume the zoladex is suppressing it. When you come off zoladex assume you have a healthy prostate and your PSA will rise to 2.02 anything below this is good, anything above it is not so good. If it does go above 2.02 remember that you would have lived 11 years post diagnosis if you had done nothing. As you are now 76 make plans for your next 11 birthdays. If anyone says they are going to get you a big present for your 88 birthday, ask them if they could bring it forward a year.
You probably could switch to 3 monthly PSA, but given the slow nature of this disease and a life expectancy of 11 years if it did return, I can't see much point in checking very often.
I was told if my PSA exceeds 2.1 my cancer has returned, but I may as well carry on enjoying myself until it gets to 10 and then they will think about treatment.
I really don't think you should worry about future treatment until you know you have something to worry about.
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Thank you Dave and Lyn - your comments and information are greatly appreciated and have calmed me down. I find just talking to others is helpful.
Some of the information is new to me as my consultant is a man of few words and his consultations are very short . He usually ends with suggesting he passes me to a cancer nurse which I decline (he probably has an always increasing caseload and needs to lose a few patients)
I’m now more inclined not to go to 3 monthly PSA tests as long as my PSA results are less than 2.02.
Thinking more positively, I’m looking forward to less side effects eg less hot flushes, feeling less tired and perhaps losing a bit of weight I’ve put on around my waist. But if it doesn’t happen then it’s not the end of the world- there’s many people in a worse position to me.
Ps- the wine was more enjoyable tonight !!
Thank you both.
Philip of EDGERTON
User
Beware PSA anxiety, realistically you won't see anything conclusive for a year and your PSA WILL go up because you still have a prostate albeit one that is "well done".
So for you PSA will always be there unlike a surgery patient who should always have zero measurable PSA.
Take the advice of the consultant re PSA frequency, don't bother doing more than that, they will come round soon enough.
User
Thank you Francij1 for your advice.
On balance, I’m sure you’re right as I become a bit anxious just before I get the latest 6 monthly PSA result ( as perhaps many of us do ) and so moving to 3 monthly will only make me a bit anxious more frequently. So why put myself under more stress?
I also need to tell myself that the consultant is the expert, not me, and so I really should do as he recommends.
Just another question - the trigger for me to be aware that the cancer is returning/ reawakening is a PSA of 2.01. Would a consultant start me again on HT at that level or wait until the PSA reaches say 10? Or would he do a CT scan first?
Thank you and others who have responded to my concerns.
Philip of EDGERTON
User
Philip I'm not sure PSA anxiety ever goes away. We relax until the next blood test and subsequent results.
User
No - 2.0 + nadir is just the point at which biochemical recurrence is defined. Some oncos will wait until you get to 5 or 10 before restarting treatment, we know of one onco who waits until 20! Others will be less definite about the actual number but restart treatment when the doubling time gets towards 6 months. And then there will be oncos who wait until something shows up on a scan and then decide what to do.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you Lyn.
I now appreciate that different consultants have their different yardsticks - which can differ quite a lot and more than I guessed they would.
Back to watching the football !!
Thanks,
Philip of Edgerton.