PSA SIGNIFICANT INCREASE POST ERT

Dave, hope all goes well next week. Hopefully your results and meetings will give you reasons to be a bit more optimistic. 

Thanks Chris 

Dave , I wasn't going to have surgery, but I did. Why would I have surgery I wasn't ill, why put myself through all those side effects. I wasn't got to have salvage RT pretty much the same reasons. I definitely wasn't going to have a lifetime on HT, but I have. I did reduce the dosage for a while and I am trying to get the balance of meds right. There is perhaps a big difference between being 77 & 74, I know I can't do what I could 3 years ago. You sound a lot more active than me. As I has said to others you can always stop the HT if it gets to much. I was hoping to be gone before I was 75 , something has changed that attitude in my head,not sure what.

CJ, another member on here had a similar out look , he even hopped off the anesthetic table. Hopefully he will come along with words of wisdom.

Take care .

Thanks Chris 

As you've said yourself, a slow rise is a good rise. 

Given the amount of time that's passed since your original treatment, you might well be able to have some form of focal therapy, without either HT or Chemo, if required. Old Barry is always the benchmark on this one.

Jules

Dave, just for info after my PSMA at city my PSA did rise by 0.2, not sure why, perhaps just time and progression. After my other two PSMA scans using a different tracer the PSA did again rise quickly. It is now back to 0.04 since starting HT and hopefully the rises were a temporary effect of the tracer. 

Thanks Chris 

Update. Saw consultant today. PSA 4.5, doubling time by my calc 5 months. Spread to pelvic lymphs, too many for SABR. None in gland so no point to RP.

No complicated decisions for me to make about what (if any) treatment.

Standard procedure. Bicalutamide tabs, 4 weeks starting today, decapeptyl injections, 1st at hospital next week, thereafter at GPs (that'll be hit and miss!). 

See consultant again in 6 weeks and then decide on HT alone, or with tabs, or with tabs and chemo.  He called it "single, double or triple". I THINK he favoured double, chemo held back for later. So do I.

Good bits, not bones. Bad bit doubling time and that one or more of positive lymphs on "pathway" from pelvic to abdominal area (last bit my reading of the Report).

Overall we agreed not good but could be worse. Guess I'll try the recommended, very much standard, route for 6 months and then reconsider. 

Some incidental findings of PSMA PET scan suggest life expectancy pretty limited anyway. 

Just hope HT side effects as benign as before and for 2 years after original RT treatment.

Onward but most definitely downward!

dave.

^ Thanks, Jules. Yes, slightly on the worse side of what I was expecting. "Not good, could have been worse" sums it up I think. 

Clock ticking down, 12-24 mths to go I predict..... but would have been much the same irrespective of cancer.

My younger-self's life style was not conducive to longevity. 55 years ago none would have put money on my reaching 30! And when I finally quit the drink 22 years ago I was within a couple of months of death. 

Life is relative. The children's cancer ward is adjacent to Oncology Outpatients. Puts my experience into perspective -  I have no reason nor right to feel that I have been dealt a bad hand. Quite the contrary.

Best wishes to all,

dave.

Hi again, Dave.

I'm also very sorry that your disease is metastatic.

I've just turned 69 years. According to a 'good book', I should 'pop me clogs' at three score plus ten. I wonder if prostate cancer was about back then? If so statisically at least one of the ten disciples must have had it.

I'd better make the best of the next twelve months.

Joking apart, mate. Like you, my debauchery should have seen me off years ago. All I can do, is hope that you, like many on here have done, make a mockery of Pca mortality statistics.

Good luck, mate.

Bone density investigation today. I assume it will be "low"  -  my main exercise regime has been/is cycling which I had not realised is very "bad" for bone density!  Apparently a totally sedentary life is BETTER for bone density than regular exercise if that is cycling. 

Mine will also already have been lowered by over 2 years of hormone treatment during and after my RT.

My other assumption is that low density will impact on choice/intensity of on-going medicinal castration.

Which brings me to "why not orchiectomy (surgical castration) rather than medical androgen deprivation therapy?" This hasn't been mentioned to me  -  nor does it get much attention in general discussions. At my age it seems the obvious choice.

Any views/comments before I raise this with Consultant?

Thanks, dave.

Thanks Peter. My wait time (worryingly?!) short. Saw consultant on 20 October. He didn't mention DEXA, but I got an appointment for today (Nov 4) dated 22 October! I'm assuming consultant expects results before our next meeting on 1 December.

I'd never seen any references to the dangers of cycling! Basically been averaging 100-120 miles per week, all year, all weather, for 22 years since I quit the alcohol. Now I know that had I just sat watching telly and over eating my bones would have been stronger! Huh.

At 77 with COPD I was quite pleased with my 28 miles in strong winds on Saturday and 123 miles week, but in fact entirely counter-productive! 

And with a low-healthy BMI I have done even more damage. Clearly can't win......

Hi again Peter. Nice and easy bone density scan done. Told that Consultant will have results when I see him on 1st December.

I'm pretty slow and hills not my thing any more, but yes muscle tone good (according to my fitness champ niece - off road ultra marathons, that sort of thing!). But only from the waist down. I must start weights...

I intend fully researching orchiectomy option before my next consultation.

Onward and downward......

Dave.

^Peter. Interesting stuff and were I younger and in general good health I might work a new regime. But I'm not and whatever I do ain't gonna make a significant difference. Weights and maybe a little more walking about as far as I am prepared to go.

The 45/65 y.o. comparison is telling: the decrease in physically demanding work and the reliance on cars one would imagine, maybe plus processed foods? I did a fair bit of heavy manual labour in my youth and always been relatively active, but over 30 years of heavy drinking until 22 years ago and the recent hormone treatment will have more than counteracted any benefit. 

I am where I am. I am increasingly drawn to surgical rather chemical castration, unless there is a medical reason against, rather than just the pressure of the drug companies!

Very best of luck with your results and next steps.

Regards, Dave.

^ thanks Adrian. Not "conclusive" but  certainly nothing to deter me from pursuing option with my Consultant, although I suspect he will not favour it. 

The main reasons the surgical option has gone out of fashion seems to be self/body image on the patients' part, the irreversibility and the hope of new treatments. All valid concerns at say 50 y.o., but not at my 77. My partner of 7 years (both of us widowed before we ever met) is very understanding and I believe she will support whatever decision I make. 

The oncology profession and big pharma do not of course promote one-off surgical "solutions". But the more I think the more likely I am to press for surgical unless the Man has good medical arguments against.

Good luck all,

Dave.

That said there are benefits eg much less bone loss and other other metabolic benefits, but that may be because it's not as effective...

I've (as far as possible!) put this all to the back of my mind for a few weeks but as my next appointment (Dec 1st) looms decided best start thinking again....

Other than surgical, need to decide single, doublet or triplet drug plan. Or of course refusing any and all treatment. I'm about to finish the bicalutamide blocking 1 mth course overlapping 1st decapepty injection. Obviously early days but nil side effects. Is that a good or bad thing?

Adding 1 or  2 other meds (erleada/apalultamide and docetaxel) will obviously increase the certainty of side effects, particularly the chemo element, which will also intrude far more into my "normal" living. I assume recommendation(s) will be related to my PSA response to decapeptyl alone?

Initial reading strongly suggests that docetaxel is a step too far in terms of quality of life. Earlier death preferable. 

Surgical castration definitely back in the frame.

Any and all comments, experiences, thoughts welcome!

Thanks, Dave.

^ Thanks Peter. Not sure where 13 and 0.03 came from  -  sorry if I have confused the issue.

As best I can find, my records show:

Pre-2021 RT 18.6

Post RT

May 2022       0.04

Nov 2022       0.03

Apr 2023         0.03

(LHRH ended July 2023)

Nov 2023   < 0.03

June 2024   0.26

1 July 2025   2.9

13 Oct 2025   4.5

(Bicultamide started 20 Oct, decapeptyl 30 Oct)

(Next PSA test c. 26 Nov, see Consultant 1 Dec)

Rough calculations give a doubling time over last 15 mths of 3-4 months. If continues from 4.5, then PSA >70 within 12-15 months. 

The numbers pattern possibly suggest that 3 mthly decapeptyl injections kept it at bay. Whether re-starting will have any effect is another matter.

As you suggest I shall try to add this to Profile.

Thanks for prompting me to look at the profile, although I can see nothing encouraging in it!

Dave.

Hi Dave,

Chris is right that I thought he was talking about you.

It's right you're having another test after only a month. You never know the last one might have been a bit high.  That happened to me in the last 3 tests.  Although I put it down to a period of disruption and then re-establishing my routine.

I tried to find Dr Scholz's video about triple therapy but couldn't. Whether you're fit enough might be question but Scholz says you can reduce the triple if it doesn't suit you. Keep us posted.  All the best, Peter