A history of PSA readings, how accurate are they?

[C0zm0cat]

Hi there everybody

Im new and have just discovered this site and its so good to see many others who have tried different treatments for prostate cancer.

My story began in June 2008 with a Gleason 4+5=9 and a PSA of 12.9. prior to radical prostatectomy to remove prostate. Post op PSA was nadir =0.03 after salvage radiotherapy. Onwards to 2010 PSA started to climb 5 and started Eligard (testosterone suppressant) . Then in 2011 started new drug trial Oterenol or TAK 700 then changed to Lucrin with PSA hovering around 12. During drug trials my PSA were all over the place because dumb admin nurses forgot to keep me on Lucrin to which my PSA rocketed to 45!! After coming off drug trial and resuming ADT drug therapy with Zoladex in 2013. My situation improved a little until last year September 2017 when PSA sky rocketed to 179!!

As per usual my oncologist (3rd Onco by then) recommended CHEMO to which I totally refused to go there!! My prognosis is described as 'asymptomatic' i.e. not showing outward signs of disease. Decided to do some research and found a treatment called Lutetium 177 and did 3 treatments in September 2017 at Sydney MacQuarrie Hospital. Remarkable results with PSA dropping to 24 from 177 over 6 months to June 2018. (PSMA PET Gallium scans showed bone metastasis in shoulders and lower back pre Lutetium treatment as well)

From JULY 2018 PSA starting to rise again to 51 then started on Enzalutamide or Xtandi for 3 months to see if this would halt the rise . Its hasnt shown any reduction as yet as they say it may take 3 months before it kicks in. PSA today is 78.91.

My question to those out there is since 2008 to 2018 my PSA has modulated up and down over these years. My physical health aint too bad, I can still walk my dogs for 30 minutes each day and my bodily function are all in good order!! How high can PSA readings go before you're pronounced dead??

[Hazard]

Hi Cozmo, good to see you still fighting after 10 years. I have only been in this battle since 2015 but from my perspective, please don't be afraid of chemo. What have you heard specifically that makes you determined to avoid it? There is generic negative press for chemo but docetaxal can be quite mild. I have just finished 9 rounds of docetaxal, had a very good response and very very minor side effects. Read my other posts if you are interested in what I did to prepare for chemo.

Regarding Lu177 - I assume that you got this through Theranostics Group? Looks like it worked well for a while for you, what side effects (if any) did you experience? I assume that treatment is very much like a standard PET PSMA but how did you feel afterwards? My PSA started going up again after chemo finished and if it goes up again in this month then likely I will go on Lu177 trial at Peter Mac in Melbourne.

Best Regards, Hazard

[C0zm0cat in reply to Hazard]

Hi there,

Thanks for the chemo encouragement, but Im just a vain stubborn bugger when it comes to losing my hair and destroying healthy bodily cells as well. (I need all my healthy cells)

The Lutetium treatment side effects were mild really, just some bone flare or inflammation of joints which a short round of prednisone fixed. I had 3 rounds of it but the question still remains , how long will it last? The result of post scans showed reduction of lesions in lymph nodes or soft tissue but no effect to bone mets. There is the treatment of Radium223 or Xofigo for bone mets but the same question is still being asked, how long will it last? (Unless you have Health Insurance these options are expensive!!) Treatment was administered by Theranostics. Lutetium isnt here in New Zealand yet but will be later or earlier next year. (Hopeless Govt Health boards here!) I;ll be interested in following your results if you do decide to do Lutetium.

Cheers Hazard

Regards

cozmocat

[firefox12]

My PSA started at 10,178. There us really no upper limit. I have heard of a few people with a PSA of over 25,000. PSA of over 10,000 is very rare but does happen and men can be well with this. My PSA is down to 383.

[Ian2017]

Keep in mind that PSA does not always work as an accurate indicator of the state of your cancer. In my case, my PSA has never gone above 6 yet I am stage IV with bone Mets etc. At initial diagnosis in July last year it was only 0.379. Currently, post-chemo (6 x docetaxel) it is 0.02.

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