Frank
Maslen and his wife Helen live in London, England. Frank's age at diagnosis in
January 2003 was 61, his PSA 6.7, Gleason 6 and he was staged as T1c (T2b after
treatment). His treatment of choice was Surgery. Here is his story:
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.
Kind
Regards,
Frank
Maslen.
Frank's
e-mail address is : fandhmaslen@aol.com
