14 years today......

[Guest guest]

I got my latest PSA result on Friday, 14 years to the

day from the date of my biopsy. Ten weeks after starting my next round of ADT

(one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m

hoping that when I get the next shot next week, the third shot may be unnecessary.

No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second

guessing, so on anniversaries like this I never start on the “what if’s”

, but I do look back on what has happened over the years and wonder how many of

the things we (my good lady and I) have done in these past 14 years we would

actually have go around to doing without the impetus of a life-threatening

disease. Would we still be saying “We MUST…..……one of

these days.” Certainly the dire forecasts of my early demise helped us

focus on what was important now – as a good friend said “This is

not a rehearsal.” , and so we have been to places we had wanted to see

and travelled far and wide. We’ve had some great experiences and have met

people we would otherwise never have got to know. I know that the newly

diagnosed man – and his loved ones – may find it difficult to

see any good in his diagnosis, but I am here to say that for most of us, it

ends up as a positive experience simply because we can establish more clearly

the value of being alive.

The other aspect of our shared disease that I contemplated

was how little things have really changed in the past 14 years. Of course there

have been what appear to be significant improvements in the two mainstay

therapies – surgery and radiation, with new, and very expensive machinery

being designed and brought into use. But ……there are still no studies

that demonstrate that using a robot assisted surgical procedure is in fact a

better way to go than the old manual open surgery; that the high doses of

radiation delivered more accurately and more quickly will in the long run have

a better outcome than the old, smaller fractionated dose protocols; that proton

beam radiation is better or worse or the same as photon beam radiation –

in fact in some quarters this is regarded as an experimental therapy despite

the fact that it has been used on prostate cancer men for more than fifteen

years. Is Brachytherapy a better choice than EBRT (External Beam Radiation

Treatment) – we don’t know because there are no studies. Why are Cryotherapy

and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both

were used fourteen years ago, but there are no studies to show how they compare

with other treatments. And so it goes – no apparent co-operation, no

agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are

initially are in much the same position as I was 14 years ago. Seeing doctors who

seem to have biased opinions, to provide information that is outdated, to

apparently not have any real interest in the long term outcome. Maybe that’s

unfair but after reading literally thousands of experiences, those are some of

the conclusions I have come to. I don’t think it is likely to change in

the future, but whatever comes my way, I’m grabbing life with both hands

and we’re having fun until something stops me, literally dead in my

tracks!!

All the best to all of you

Terry Herbert

in Melbourne Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony

Metastasis: Aug '07: Intermittent ADT: PSA 2.3 Aug '10

It is a tragedy of

the world that no one knows what he doesn’t know, and the less a man

knows, the more sure he is that he knows everything. Joyce Carey