Pete
Carson and Donna live in Inverness-shire, Scotland. He was 55 when he was diagnosed
on 5th October, 2002. His initial PSA was 12.0 ng/ml but he does not know his
Gleason Score or his staging, although it seems likely he was staged T1c. His
choice of treatment was Radiotherapy then hormones - EBRT (External Beam Radiation
Treatment) and ADT (Androgen Deprivation Therapy). Here is his story.
I
was 55 and was taken into hospital with severe diverticulitis ( bowel disorder).
I had NO symptoms of prostate cancer. However someone (thank goodness) did a test
for PSA count and discovered a count of 12.0 ng/ml. When I got home from hospital
my GP called me in to give me the news. Devastated. Death was how long away ?
Would I see Christmas ? Check again a few weeks later - PSA count had gone to
21.0 ng/ml.
So to hospital for a course of six weeks of daily radiotherapy
and then on to hormones. I was on daily hormones (Casodex) for 3 years and the
count came down to 0.01. Came the day when the specialist felt we should see what
would happen if treatment was stopped. So I came off the hormones and went on
with no treatment at all.
Over the next two years the count rose very
steadily from 0.01 to 3.6 and was still rising. I panicked and started to pester
my specialist. He assured me that this was very understandable and we would continue
to monitor. [Presumably this decision was
made on the basis that Pete still has an entire prostate gland which generates
a 'normal' amount of PSA]. So from then until now the PSA has wandered
a round the 5 mark - every 3 months I have a test done. The last 5 results over
the last 15 months, have been 4.1, 4.8, 5.4, 5.8 and then down to 4.8 again. So
I continue to have test every 3 months and hopefully the result will stay around
the 5 mark.
Some may feel that is high - but I think stability would be
great as long as the rise stops.
Over
the next few months after my last post - every 3 months - I had a blood test and
the PSA result continued to fluctuate. It seemed to rise one reading and fall
the next - up to 5.8 down to 5.2 etc. Then for the first time in recent months
- it rose twice in a row and also for the first time ever - it went over 6. Panic
again !
By
this time the specialist - presumably fed up of me e-mailing - had given me the
e-mail of his cancer nurse and so I continued to bother him instead. At that point
my GP got me an appointment back at the hospital - and I had the chance to meet
an absolutely wonderful Indian doctor - who really took time to explain to me
in language I understood - what was probably going on. He also did a thing online
- through Google of all things - which was some kind of doubling effect which
takes your initial count (immediately after treatment ) and over the number of
years, works out a figure. If that figure comes out under 12 months - there is
cause for concern. [This seems to refer to
a calculator which uses PSA doubling time to calculate the potential aggressiveness
of the disease. There is a list of some of the calculators on The
Palpable Prostate.] Mine was almost 46 months so he really
put my mind at rest. Then having gone up two months in a row - it came DOWN two
months in a row. So it now sits at 5.2. I am due the next PSA test at the start
of May so I am hoping it stays the same or maybe even falls a little.
I
think on reflection that I took every tiny rise as a sign of impending doom whereas
I now know that is not the case. All in all much more positive now.[I
wish more men understood this issue better and thus kept what has been termed
PSA anxiety to a minimum. I always suggest that men read PSA
101 and my 28 Day Experiment
to get some idea of how variable PSA results can be for reasons that have
nothing to do with prostate cancer.]
Pete's e-mail address
is: p_carson@hotmail.co.uk
