I was persuaded to have a PSA test in 1999 by my wife after she had read a newspaper. A result of 7.6 ng/ml precipitated a consultation with one of the best urologists in London. However a six point biopsy revealed only high grade PIN.
For 3 years six monthly PSA's remained constant or even fell. At the end of 2002 I read Patrick Walsh's excellent book "Guide to Surviving Prostate Cancer". One sentence leapt off the page. Paraphrasing it said "if you only find PIN you haven't looked hard enough".
I went straight back to the urologist and had another biopsy, even though by this time the PSA had fallen to 6.1 ng/ml. One positive core, Gleason 6, and a lot more PIN.
At 61 with heart problems the direction was far from clear. For 3 months I had a set of scans on the prostate and elsewhere and tests on the heart, tried to get fit and lose some weight, before going for a radical prostatectomy in April 2003 by which time my PSA had risen to 9.7 ng/ml.
The operation went well but high blood loss and pulmonary problems kept me in Intensive Care for a while. The biopsies showed containment and my PSA is now undetectable.
I recovered continency after two months but then required minor treatment for the removal of scar tissue which was blocking the urethra. I would consider that I was fully fit again after about 6 weeks except for a feeling of tiredness which lasted rather longer. However, after 10 months I remain impotent even with the help of Cialis etc. Six monthly PSA's continue.
It is now the second anniversary of my surgery and today I saw the uro. My PSA is not detectable. I am essentially completely continent but have total ED which defeats all three main oral options, so am about to try the direct injection system. I remain very careful about diet, taking no dairy products and minimal fats. I also continue with the selenium and the vitamin E.
Last PSA, July 2006, over 3 years since the radical prostatectomy, was less than 0.1 ng/ml. Continence is essentially 100% but unfortunately ED continues near total. Interesting comment from the uro this time when I said that I was I was looking forward to eating cheese again having said I would be off dairy for 5 years. "Don't - the evidence is building against dairy products and we are going to go mainstream with advice very soon".
Over 4 years since RP and the news is not so good. PSA last month was 0.09 ng/ml. So what's the beef? Well we are using high tech gear here now and the actual reading is quoted to 3 figures if you want to believe it! Whilst this is a low figure it clearly has gone up since last year which came in at 0.05 ng/ml. At the time we dismissed this as being at the 'noise' level but we are now clearly dealing with a rising PSA (confirmed by repeat) and something is happening somewhere.
An MRI scan found nothing but this would be most unusual at this PSA level. This territory seems to be better covered by Scardino's 'The Prostate Book' than by Walsh's 'Guide to Surviving Prostate Cancer' which was my bible previously.
Having met a good oncologist we are now discussing stategy which will likely involve scavenge radiotherapy with/without ADT. The key question is when. So we are trying to follow the PSA rise closely to determine the doubling time and any fall in the doubling time so as to make a decision in the next few months.
Whilst I am not too depressed about the this turn of events I am angry. I really felt that with the 'gold standard' treatment and with my excellent histopathology all this was behind me. So, as they say at the beginning of the darts matches on TV here - "Game on!"
It's now 6 years since diagnosis so I think I've earned my silver bar! [Yes, indeed - congratulations!]
Three-monthly PSA's have been rising slowly but the level is still very low. I might even convince myself that the rate of rise is falling which could indicate that there is benign prostate tissue remaining. I am due another PSA in 4 weeks time and then a discussion with the oncologist.
Radiation therapy is the next step but the question is when. Otherwise things are good.
PSA continued to rise slowly in line with a diagnosis of "some benign prostate tissue remaining". Then in June 2010 it rose 21% in a month to 0.24 and passed the "action level" for post RP cases. Presumably cancer has developed in the residue which is not unlikely given the extensive PIN found in the histopathology.
A bone scan suggests that the problem is confined to the prostate bed so I am on a course of Casodex prior to radiotherapy in October. After 4 weeks the PSA has dropped to 0.09 and side effects are minimal.
It is now just over one year since the course of Casodex plus radiotherapy was completed. The treatment was somewhat punishing but most of the side effects have now receded.
I am left a little tired, depressed and overweight and not getting enough exercise, which is probably the cause of a big hike in BP. My GP is on the case. My brilliant oncologist is very pleased but wants to continue 4-monthly PSAs.
It has been a good year from the point of view of PC. I have now achieved 10 years from positive diagnosis and have an undetectable PSA. The oncologist is well pleased and so am I. Otherwise I have had a tricky hernia fixed and a double cataract operation. The rest is old age or just decrepititis as we call it here!
PSA continues undetectable. Oncologist very happy - she says that chance of recurrence is now low and if it does return she has enough treatments in her drawer to take me past my life expectancy. We have moved to a single level loft apartment in Soho and my only problem now is arthritis.
Just seen my wonderful onco who doesn't want to see me again! My PSA remains undetectable but we will continue six-monthly PSA to be sure. I am to have a sigmoidoscopy in due course but this is protocol after RT and is not symptom driven. Life is good here in Soho.
Another year. PSA still n/d but bad and worsening neck pains. Very conscious of my late friend who went to his GP with neck pains. The GP measured a PSA of 5800(!) with no other PCa type symptoms. So I researched PCa metastasis with low PSA and found that it is possible but with very low probability. My wonderful oncologist immediately fixed a full set of scans which revealed no PCa but serious degeneration of the spine which is being treated by steroid type injection, manipulation and exercises.
Another good year and I am now looking forward to promotion to Platinum grade in January. PSA remains undetectable and my non PCa problems have been eased by a review of my statin regime and some serious machine-based Pilates.
Frank's e-mail address is: fandhmaslen AT aol.com (replace "AT" with "@")