IS MY PERSONAL HISTORY
was diagnosed with Prostate Cancer in August of 1996. My wife Anthea and I were
living in Kalk Bay, just outside Cape Town in South Africa. I was 54 years old,
said to be young for such a diagnosis, understandably, since the median age for
diagnosis is over 70 years of age in most countries, although heading towards
the mid-60s in the USA.
Heading for the sixteenth anniversary of my diagnosis,
next month it seems appropriate to record how and why I came to the conclusion
that the recommendations made by specialist doctors in South Africa and the United
States of America should not be acted on. And the outcome of the decisions made
I had been diagnosed with BPH (Benign Prostatic Hyperplasia) in 1992,
when we were living in Australia. We returned to South Africa in late 1995. In
August of 1996 I developed considerable urinary problems, both as to frequency
and urgency for which I saw a doctor on 7 August 1996.
The doctor examined
me thoroughly, including a DRE (Digital Rectal Examination) and then drew blood
for a PSA test. Two days later, he called me to say that my PSA was 7.2 ng/ml
and he thought I should see a specialist urologist.
Looking back now, I
am fairly certain that I had a form of prostatitis triggered by an overload of
fat intake. I believe that, had the doctor been better informed, he would have
suggested a course of antibiotics, my PSA would have dropped and I would not have
been diagnosed with prostate cancer at that time.
My wife and I saw a urologist
the following Monday - 12 August. Another DRE produced a verdict that he could
"feel something" and a date with the radiologist for a TRUS (Trans rectal ultrasound)
and a six needle biopsy two days later. The biopsy was positive and I was sent
for X-rays, CAT scans and bone scans. I asked for a second opinion on the biopsy
results and briefly discussed treatment options. The urologist said that, provided
there was no evidence of spread beyond the capsule, I would have surgery which
would cure the disease and assured us that side effects were minimal and that
with modern techniques potency rates of "up to 90%" had been reported.
went back for a second appointment with the urologist. He told us that the second
opinion on the biopsy had shown a lower Gleason score (2+3=5) and summarised the
other test results - all were negative. He confirmed that it would be best for
me to have a RP (Radical Prostatectomy) after my return from a planned business
trip to Australia.
By now I had learned enough to know that prostate cancer
was not normally a rapidly progressing disease and that I had time to do a good
deal more research. Convinced that I was not about to die in the immediate future,
I headed off to Australia with a heap of reading material and plenty of time to
absorb it. I returned with a good deal more knowledge and two specific points.
The first was to have a MRI scan. The second was that it made much more sense
to try and manage the cause of the disease itself rather than tackling the symptoms
that my diagnosis represented.
I had my second PSA test. It was down to
4.6 ng/ml from the initial 7.2 ng/ml.
The news was not good so good from
the MRI scan. The radiologist who conducted the scan staged the disease as T3.
The oncologist I consulted felt was not correct - he would not have diagnosed
anything but T1c from the absence of anything abnormal in the gland. He said that
as far as he was concerned, Watchful Waiting for some months would not present
any significant problems.
We had started to change our diet some time before,
but half-heartedly. Now we cut out red meat, dairy, coffee and alcohol - I really
missed my red wine and liqueurs after dinner parties! I began to exercise regularly
- we live on the side of a mountain, so walking is easy and very healthy. I also
started taking various supplements, notably Essiac and Saw Palmetto, plus Vitamin
C, anti-oxidants and other vitamins. Each morning I took our dogs out for an hour
on the mountain followed by laps in the tidal pool at the bottom of our street.
Because I think visualisation is a very powerful technique I imagined that my
body was as badly overgrown and full of weeds as the garden was and as I started
getting the garden in order, I visualised my body getting into better condition
too. I went along to yoga relaxation classes where an extraordinary teacher seemed
to divine my problem and gave me exercises that she said would help.
January I had another PSA result - 4.7 ng/ml only 0.1 ng/ml up on the last one.
At this stage I had no idea that PSA was not prostate cancer specific nor did
I know that it is not an accurate tests, with results varying considerably for
no identified reason.
A friend of the family who has a radiography practice
in the US offered to do a full series of scans for me, and to introduce me to
the senior people at a major institution, a centre of excellence, free of charge
provided I could get to him. We did this in March of 1997.
The MRI scans
were very thorough and included an endo-rectal coil. The institution's pathologist
reviewed my biopsy slides - the Gleason was up-graded to 3+4=7. I found out later
that the slides they returned to me were not mine. My slides could not be found,
so I have always treated the grading with some suspicion, but have used them as
a 'worst case' position. I was introduced to an oncologist, radiologist and a
surgeon. All of these men were very pleasant people, who gave me a thorough examination,
avoided contentious issues and recommended the gold standard of surgery. I was,
and am still, very grateful for the time all these men gave us. But none of them
could tell me why I was wrong to continue Watchful Waiting or, as I thought of
it, Conservative Management - now termed Active Surveillance. The surgeon urologist
warned me that I was taking my life into my hands by not having immediate treatment
- he was shocked that I had waited so long (all of 7 months) before taking any
Back home again, I had an appointment with the oncologist to review
the information from the US. We discussed treatment options again and he said
that although his inclination would be to treat me, he could not argue against
my proposed non-conventional approach.
I also consulted a fully qualified
medical doctor who used conventional medicine where he believed it was required
but also used complementary and alternative medicine where appropriate. He endorsed
my plan of attack, suggesting some options if there were any signs of failure.
He was also able to show me some medical references to spontaneous remission of
prostate cancer, an issue denied by most doctors.
In September, soon after
the first anniversary of my diagnosis, I had my next PSA test - six months after
the last one. I was very surprised to find that it had dropped right back to 3.3
ng/ml. I realised that this may have been because I was taking regular and high
doses of Essiac and Saw Palmetto at that time. I eased back on both of these items
and had a further PSA test 3 months later in December 1997. This came in at 4.73
ng/ml - virtually identical to the one eleven months prior. Free PSA tests were
available by that time and my free PSA was 23%. These rersults were all indicators
that the 'elevated' PSA level on diagnosis and subsequently was most likely caused
by causes other than prostate cancer.
My next test was somewhat more than
a year later at the end of February 1999, when I had a slightly lower PSA of 4.35
ng/ml but a free PSA of 42%. The results in January of 2000 weren't quite as good
as they had been a year before. Total PSA was 5.7 ng/ml and free PSA 27%.
had intended to have another PSA test in June of 2000, to see if the numbers had
changed at all, but by then I had volunteered for a small experiment, funded by
the generous folk on Don Cooley's PHML list - and excellent Internet Forum now
closed. For this experiment, I had blood taken on 28 consecutive days. The draw
was at the same time each day and I tried to neutralise any outside influence
by following follow the same diet and exercise each day for the period, getting
the same amount of sleep and so on.
Initially there was little fluctuation
- the first week's readings alternated between 4.90 ng/ml and 5.00 ng/ml - but
by the third week they were quite startling. On day 15 the reading was 4.50 ng/ml.
By day 18 it was 6.00 ng/ml as it was on day 19. By day 22 it was back almost
to where it started at 4.60 ng/ml. Overall, the average reading was 5.08 ng/ml
with a median slightly lower at 5.00 ng/ml. Although the funds for the experiment
did not stretch to free PSA readings, the laboratory had supplied some. They ranged
from 30% - 36% with a median and average of 31%. The doubling time calculated
from the full 28 day result was calculated at 229 days.
This forecast proved
to be incorrect - in September 2001 my PSA was 5.74 ng/ml with a Free PSA of 48%.
Anthea was concerned that I had not seen a doctor for the best part of four years
and so I made an appointment for later in the month with man reputed to be the
best urologist in Cape Town. I took along my entire medical history, but asked
him if he would be prepared to examine me prior to reading this as I wanted his
unbiased opinion. He agreed to this. He said that my gland felt normal and a little
large. He was very impressed with the high free PSA result and said that I should
have an annual check up since I was now 60. I thanked him and gave him a resume
of my earlier diagnosis and the relevant medical reports, which he read with interest.
Our meeting concluded with his saying that I should continue with my current regimen
as that seemed to be doing the trick.
My PSA in September 2002 came in
at 5.88 ng/ml and 38% fPSA and in September 2003 figures were 6.25 ng/ml with
that fPSA still hanging in at 38%.The estimated doubling time using all my data
to date was 11.4 years.
We went off to the US [driving for five weeks and
5,000 miles] soon after my September 2003 tests and the BPH (Benign Prostate Hyperplasia)
with which I was diagnosed in 1992 started playing up. I think it was because
I had become a little slack on all the issues I think are important in maintaining
good health. We had been travelling a good deal in the previous year, apart from
the American trip and I had been neglecting my exercises and my better eating
habits. As a result I had put on a bit of weight and was not as fit as I had been.
I think this often goes with the territory if you are on Active Surveillance and
trying to change your ways - as the years go by with no signs of progression,
you start to revert to the old bad habits you learned in the 50+ years prior to
Anyway, be that as it may, I was having many problems, mainly
with nocturia (distrubed sleep from frequent trips to urinate) and finally swallowed
my pride and went to see my urologist, who suggested we try Flomax, a drug that
seems to help in some cases. That didn't do much good and although I went back
to my previous regimen, lost weight, ate properly, exercised etc, it seemed that
the BPH had got ahead of the curve, because it didn't respond as it had done before.
This created a bit of a quandary, as we were off to the island of St Helena on
a business trip (there is no airport, so the trip is five days each way by ship
and seven days on the island) and the way things were going I was concerned I
might have a serious issue that might be difficult to deal with, given the limited
facilities available on the ship and on the island.
The urologist and I
kicked around several ideas before he thought to do an ultra-sound scan of the
prostate. It was pretty big - he estimated about 180 gm - but this had not been
apparent because the growth was upward into the bladder and thus could not be
felt by the DREs (Digital Rectal Exminations) I had been having. My PSA also showed
an increase, going up to 8.55 ng/ml, although there was still a free PSA of 42%.
So I bit the bullet and agreed to a TURP (Transurethral Resection of the Prostate),
which I had on June 10, 2004. Everything seemed to go well and, as most men who
have had this procedure will tell you, it is pretty cool to have a stream like
a young man again!
One of the reasons that I opted for the TURP rather
than some form of ADT (Androgen Deprivation Therapy), which would have shrunk
the gland, was that it gave me the opportunity to get a good sample of material
from the gland to see what had been happening these past eight years since diagnosis.
My uro also took four large needle biopsies of the peripheral zone while he was
at it. The histology report basically stated that the Gleason Scores on the tissue
examined was 3+3=6 (which was my original diagnosis) and there was about 20% of
the material from the TURP that contained evidence of invasive primary adenocarcinoma.
seemed to me that this showed evidence of some growth over the years, since the
volume was probably higher than it had been, but no evidence of increasing aggressiveness.
This is also a feature of the Active Surveillance studies currently being undertaken
(which had not started when I was making my decisions); most of the men in the
studies haves no evidence of increased aggression as the years go by. In fact
in about 25% of cases subsequent biopsy procedures are negative - no cancer cells
are found. Given the biopsy results, my plan was to continue what I had been doing,
accepting that although my regimen may not have been successful in causing the
tumour to regress, it may well have slowed it down.
My PSA results post
TURP were disappointing. The first was in September 2004. I had hoped that it
would be significantly lower than the June result, but it came in almost the same
at 7.54 ng/ml with a free PSA of 41%. Not too bad, but not too good. My uro said
that there could still be an effect from the procedure.
The next PSA test
was scheduled for three months later and I had that in early January 2005. That
did give me a shock because it had almost doubled to 14.72 ng/ml. The free PSA
figure had also dropped markedly, to 28%, the lowest ratio for some years and
only a little above the January 2000 number. I always advise people to check any
unusual PSA number by having another test, so I did that a week later. The second
test came in slightly lower than the first at 12.99 ng/ml with a free PSA of 34%,
the equivalent of my long term average number.
I noticed on the second
of these tests that the assay method used was not the same for previous tests.
I spoke to the haematologist at the laboratory and he confirmed that they had
changed protocols (soon after my September result, as it turned out) but, so he
said, they had ironed out the initial teething problems and results from the new
method were comparable with the old. However, his confidence in this statement
was somewhat undermined when he told me that I was the second 'customer' within
days who had a doubling of PSA results. What a coincidence indeed!!
to double check the following month I had a third PSA and, the same day, had the
test done by a different laboratory. The results differed, naturally, but were
similar at 12.30 ng/ml with a fPSA of 28% and 13.17 ng/ml with fPSA of 34%.
left me in something of a quandry. I saw my urologist and asked him to prescribe
a course of antibiotics, on the basis that there might be some infection from
the surgery the previous year. After all, there were small bits of prostate gland
coming out with my urine for some months after the TURP. I thought that one of
those lodged in the gland might be causing a problem. I completed the course of
antibiotic and had my PSA tested again on 19 April. It came in at 17.44 ng/ml
with a fPSA of 28%.
The May PSA came in a little higher than April at 20.44
ng/ml, but again with a high fPSA of 29%. That was my trigger to see an oncologist.
His recommendation was to have another bone scan to test for metastasis. This
would be testing the worst case scenario first and might confirm that my primary
treatment had failed. I had the scan at the end of May - great improvement in
comfort factor since the first one in 1996, but taking even longer. The good news
was - no change since the last scan, no sign of metastasis.
June and July
were very busy months for us. I had to go to the island of St Helena on my annual
business trip. No sooner were we back from that than we were off to Australia
for our granddaughter's first birthday and to buy a house, as we were moving back
there to be closer to our son's family as it grows.
My next PSA was like
the curate's egg. The total PSA was up again - to 24.9 ng/ml now, with a free
PSA of 6.47 ng/ml (26%). That certainly was not good news, but at least it wasn't
as high as I feared it might be. The oncologist felt the next step should be a
CAT scan, even though these are not great at identifying tumours. I aimed to see
him within the next following week or two to discuss that and my preferred treatment
option - 'DES Lite', but when I came to make an appointment he had gone to an
Incidentally, DES is diethylstilbestrol, a form of
oestrogen and there have been many successful reports, including formal studies,
of its success in dealing with prostate cancer over the years. It is no longer
prescribed in most countries. This is said to be because of a serious side effect
in some of the men in the studies who suffered from thrombo-embolic side effects.
There were indeed some such side effects reported, however that was on a dose
higher than I would take, since the low dose treatment appears to be equally effective.
Cynics believe that the main reason that this treatment was stopped was because
it is so cheap, especially compared with other ADT (Androgen Deprivation Therapy)
drugs - which also, incidentally produce some serious long term side effects affecting
the heart and pancreas.
After completing the move to Australia I finally
saw a urologist and an oncologist in December 2005 after getting a PSA test -
result 26.5 ng/ml with a free PSA of 25% - virtually the same as in August. Unfortunately
the oncologist was a radiation oncologist, not a medical oncologist. Both recommend
Zoladex on its own to reduce gland volume followed by 3D conformal External Beam
Radiation. The urologist suggesting HDR Brachytherapy in addition. Both recommend
then a three year course of Zoladex. Neither would consider DES or ADT3 as an
option saying that there was insufficient evidence to support such an approach.
crux of the matter was simply this, to summarise the oncologist's advice:
I was ten years older (73) he would agree with my view that we could keep an eye
on things for signs of progression i.e. only start treatment when symptoms manifested
themselves or when the annual examination - DRE, MRI and bone scan demonstrated
clear metastases. On this basis he felt that the disease could probably be managed
for at least another ten years which would se me through to the current standard
life expectancy. But because I was 'so young' at 63 he wouldn't like to consider
Now this opens up all sorts of issues, not least being the
fact that throughout my life, none of the predictions made by the medical profession
about my various injuries and diseases has proved to be accurate. The latest,
and most serious, in this long line was when I was diagnosed in 1996. The diagnosing
urologist indicated a life expectancy of about five years; one US specialist I
consulted (amongst many others) told me that I was toying with my life if I didn't
have an immediate RP and went so far as to call my brother, whom he knew, to tell
him that without surgery I would not last three years - maybe five years at the
So, why should I now believe the latest predictions for the outcome
of this notoriously unpredictable disease? If the disease might be managed for
10 years from manifestation of symptoms or confirmation of metastasis, why could
it not be managed for 15 or 20 years from now? And in any event will I be around
in 10, 15 or 20 year's time? When I first arrived in Australia in 1987 and had
a medical for life assurance the view was that because I had various tropical
diseases - bilharzia, malaria, hepatitis plus a couple of others - I was a 'non-standard'
life and I would probably fall short of standard life expectancy by about ten
years. Hey - that would make my expiration date about ten years from then - 2015!!
that in mind, I was still intending to see a medical oncologist when I had a congestive
heart failure in January 2006, which put the prostate cancer issue on hold for
a while. Initially I thought that maybe that wasn't a bad thing, because, once
the heart condiion was under control, I went back to my GP for another PSA test
which came in at 17.4 ng/ml with a fPSA of 4.00 ng/ml for 23%. BUT the next test
in June was back up again, almost to the level it was in July the previous year
- 24.3 ng/ml. Unfortunately the lab did not do the free PSA test although one
was ordered. My MD and I agreed to keep an eye on things!!
My October 2006
reading was 31.4 ng/ml and I was resigned to the fact that I had should get another
bone scan. This had in fact been my plan from a couple of years back - to have
a scan every two years, but the rise in PSA focused me on the issue. I thought
I'd put it off until some time in the New Year - perhaps after my February PSA
(which incidentally was 30.9 ng/ml)
That casual plan changed somewhat and
I must say I got a bit of a fright over the Xmas period when I suddenly developed
a very severe pain in my back and pelvis, so bad I could hardly sit and found
it very difficult to sleep without very strong prescription painkillers. I kept
waiting for it to get better - I have a history of back problems and my hips have
been giving a bit of trouble for some years now. I had been working in my son's
business, bending over a worktop and had also started playing lawn bowls, all
of which may have exacerbated my problems.
But I didn't get better and
as I was running out of painkillers I had to go along to the doctor and bite the
bullet. I really thought this might be it - the beginning of the last few laps
in my marathon. By the time I had the scans the pain had subsided (and it has
never returned, touch wood) but the one scan showed an area 'suspicious for metastasis'
on my spine. It is near some other old damage and I still think it may well refer
to that, but decided to see an oncologist to get a second opinion (the first being
He said after a brief examination that he thought it might well
be a metastasized spot, but that it wasn't enough to worry about in the absence
of any symptoms. Just what I felt, so we agreed to have another scan in three
or four months and if there was a significant change, we might consider some form
of ADT (Androgen Deprivation Therapy). Essentially he believed, as do I, that
the treatment of symptomatic disease is more important than pre-empting a potential
problem that may not arise.
He was quite shocked when I asked him if ADT
would be a better option than orchidectomy (the removal of the testicles). He
said this was because men shied away from the very thought. I have never understood
that. I know that the rationale for ADT is that it is reversible, and orchidectomy
is not, but since ADT is a palliative therapy when it is not an adjuvant procedure,
surely it will not be stopped long enough for the side effects to be reversed?
And does orchidectomy carry the same risks of heart failure and diabetes that
the recent Mayo study highlighted as a potential problem with ADT?
we went off on our annual trip to St Helena Island stopping off in Cape Town to
see family and friends (you can only get to St Helena by sea and the main sailings
are to and from Cape Town) and in Kuala Lumpur because we hadn't visited that
fine city before.
My appointment with my doctor was four days after we
got back so I had my PSA done prior to that and wasn't too surprised to find that
it was up a bit again - 35.0 ng/ml - after all the travelling, changes in diet
etc. Given that it was 31.4 ng/ml in October last year and down a bit after that
(30.9 ng/ml in February and 30.4 ng/ml in April) it seems to be still following
the same kind of pattern that it has for some years now, although the graph produced
using the PSA calculator looks a little frightening! Still and all, the calculated
doubling time is 3.8 years and on that basis I will be 73 before hitting the 100
ng/ml mark, so all in all it looks a if there is a reasonable chance I'll hit
my 20 year survival target.
It took a while to get the second bone scan.
I really don't like nuclear medicine - the thought of ingesting radioactive material
just isn't one I fancy. The radiologist was very helpful in explaining the bone
scan, although when we saw the oncologist and had a look at the radiologists report,
it seemed a bit contradictory to me. The Body Scan states "Unchanged since December
2006. In particular the metabolically active T10 lesion has a similar appearance."
This reflects what the radiologist told me after the scan. The CT scan report
however - the same radiologist - says": The right-sided posterior verterbral 8
mm sclerotic lesion has increased in size to 3.3 cm in diameter."
was that the 'unchanged' report in the bone scan meant that there was no sign
of any other spots since December, whilst the CT scan showed definite sign of
growth, and significant growth at that, in the identified lesion. The onco felt
that it certainly seemed likely to be a metastasis and most probably accounts
for the rise in PSA - which had doubled since May 2005 - and I reckoned that was
most likely so. He suggested that I spoke to a radiologist about the wisdom of
radiating this lesion before we consider ADT (Androgen Deprivation Therapy). The
onco suggest a specific radiologist because he tends to work outside the square
and he felt that a referral to a more staid organisation or radiologist might
result in a refusal to radiate an asymptomatic lesion.
was a very nice man and explained the position very clearly. His concern, which
has not been clearly stated previously is that leaving the mass, which is still
small, to grow could result in interference with the nerves in the spine with
unfortunate effects. Whilst radiation was certainly a possibility and with the
equipment they have here, which is world class, the risk of collateral damage
is small, he felt that this would not be the most appropriate treatment for a
number of reasons, all of which I understood and had to agree with.
that effectively left me with the hormone therapy and since I found, after talking
to a number of local doctors that there is no way I was able to have my preferred
option of diethylstilboestrol (DES) or estradiol patches, I just had to go along
with Zoladex. There are many possible side effects with ADT, although they don't
affect all men to the same extent - one of which is depression which was what
particularly concerned me. I saw my cardiologist tomorrow to see what he had to
say about any potential problems with my heart medication. The oncologist said
"no problem" but he ain't a cardiologist!!
Just to cheer ourselves up we
booked on the best cruise I have ever seen - right around the Pacific Rim from
Sydney to Sydney - 75 DAYS!! - July 2008. Well, we didn't make the cruise - the
collapse of the global financial markets put the kybosh on that, absorbing some
of our funds and, as is so often the case in life, the contemplation of the effects
of ADT was considerably more worrying than the reality of the treatment - for
me at least. I had no serious side effects that I could notice. A bit of a tendency
towards a feeling of sadness at times perhaps, but that's about it.
weeks or so after the first Zoladex shot in May 2007, my PSA showed a very satisfactory
drop from 42.0 ng/ml to 12.4 ng/ml in August 2007 and the second PSA test, two
months later had the PSA at 3.00 ng/ml.
I had my second Zoladex shot, which
stung a bit more than the first - maybe because I'd gone on a full scale weight
loss program and was down 20 kg (say 44 lbs or a bit over 3 stone depending on
your place of residence) so there wasn't much fat to plant the depot.
PSA in November was 1.20 ng/ml, which was pretty good going, but the December
one got me into a bit of a state because it was 1.50 ng/ml. It was ridiculous
of me to be concerned, because I know that that kind of variance is within the
normal range of PSA tests, but as I have mentioned previously, I have periods
of sadness - not quite depression - and was in the midst of one of these periods
when I got the news. Added to that I had just read the abstract of a new study
by Strum (but hadn't got a hold of the full report) that seemed to indicate that
there was a substantial survival advantage for men who went below 0.05 ng/ml on
ADT and I was a long way off that!
Of course once I got out of the black
dog mood and once I read the full abstract, I realised that nothing had really
changed and so waited patiently for my next PSA test, the results of which were
very satisfactory - 0.60 ng/ml.
I was a bit disappointed with the next
PSA, which is still on 0.20 ng/m. I really thought I might get down to undetectable.
My GP felt it was better to have another Zoladex shot so I did that in May 2008.
I was having some slight side effects developing at the time. I was losing body
hair, my skin was softer and I was having difficulty in maintaining my weight.
I was concerned that the third shot might make it worse, but it didn't, and almost
12 years to the day of my original diagnosis, I got my latest PSA result - 0.17
ng/ml! It's amazing what a relief it still is after all these years to get a good
result. And how ridiculous to be happy that it is lower than the last one, given
the inaccuracy of the test. But I was. I thought it was probably as low as it
was going to go, bearing in mind I still have most of a very large prostate gland.
I felt it was good enough to go Intermittent - and that's what I told my GP in
August 2008. Even though he disagreed, Anthea and I had a good chat about the
options and believed this was a good one for us.
Because we had to can
our planned cruise in July we decided instead to go to Italy in September, 2008.
The son of old friends was getting married then so the idea was to go to the wedding
then spend a couple of weeks just driving around wherever the road took us. We
had a wonderful time. Drove 3,500 km over some very interesting roads. I thought
the Italian drivers were by and large very good - they certainly know the width
and length of their vehicles to the millimeter. We avoided all the large cities,
with the exception of Venice, which we visited for the day because we were in
the area, and spent our time in the country, admiring the scenery, enjoying the
food and meetings some very nice people. Anyone interested in seeing my pictures
can see them on my FaceBook page.
My first PSA test when we got back was
0.25 ng/ml - up a little from the low of 0.17 ng/ml. I would rather it had stayed
down, but that was never going to happen. I don't know precisely how big the gland
is right now, but last time it was measured it was about 120 gm - roughly five
times the size of a normal gland - so that in itself would generate a good deal
of PSA - about 5.00 ng/ml or 6.00 ng/ml on some calculations.
PSA was up
a tad at 0.36 ng/ml in March 2009 - much lower than I thought it might be. I didn't
get too anxious, but the thought of what I might do if there is a big jump does
come to the forefront of my mind. I had all my other annual checks too and there
was good news on the heart front too. The cardiologist pronounced himself happy
with what he could hear.
Although I intended waiting for six months for
my next PSA test, my GP wanted me to have one at three months. So in June it was
up again, now to 1.20 ng/ml, the same level as it was in November 2007. That didn't
stop us heading off to South Africa to see family and friends and to celebrate
a significant birthday with a pal of Anthea's who is hitting the same milestone
three days earlier. We hadn't intended travelling in 2009 but the death of a friend
who had PCa highlighted yet again the importance of today rather than tomorrow,
even though I'm still aiming for 20 years plus. We had a great trip to South Africa
- many parties, much laughter. I think as we all get older - most of our pals
are in their 70s or pushing 70 - we realise that we have a finite number of years
left to celebrate.
Had another 3 monthly test in September 2009 as requested
by my MD - up again to 2.2 ng/ml. At this level the lab also gave me a free PSA
level [the rules have since changed] which was 28.6%. We agreed - no change in
treatment then but January 2010 result of 5.2 ng/ml, led my GP to discuss what
I should be doing - clearly he wants me back on Zoladex. I said I thought there
were two relevant issues:
1. I still had an intact gland - and a very large
one at that, measured at over 120 gm last time that was done. This must generate
some level of PSA - a minimum of 6.6 ng/ml according to one formula - and when
all is said and done, my PSA was 7.2 ng/l thirteen years ago, when I was diagnosed.
The oncologist expressed the view that no action was required until my PSA got
up to its former level - about 40.0 ng/ml
My GP wasn't too happy with that,
but ..he's not the specialist. We agreed to have another test in April, 2010 which
I did and that was up again by another 3 ng/ml to 8.2 ng/ml - just 1.0 ng/ml more
than it was back in 1996!! The graph showed an increasing slope and a shortening
doubling time so I thought it was time to please my GP and get back onto the Zoladex,
even thought the oncologist would be happy to wait a bit longer.
we took another trip. This time to the North-West Pacific Coast of the USA. After
a flying visit to Las Vegas (just to say we've been there) and the Grand Canyon,
we flew up to Seattle to meet up with some long-time pals, picked up an SUV and
then wound our way down through Washington State, Oregon and California, staying
on the old Highway #1 wherever we could. What a tremendous trip it was and for
anyone interested, the pics are on my FaceBook page. That makes it 35 States that
we've visited - next trip must be the Mountain States I think - not sure we'll
get to the flatter bits - the Prairie States.
Back home again, I took my
Zoladex shot like a man - no reaction , thank goodness apart from a drop in PSA
to 2.3 ng/ml in the ten weeks after the first shot. Nice speed but not low enough.
I had another in August and again in November. Although we thought the US trip
was all for 2010, my darling wife found a wonderful offer for a cruise from Amsterdam
to Prague with Christmas in Cologne. We always think a White Christmas is something
special - and this certainly was. There was more snow in Europe during the early
part of December than there had been for forty or more years. Wunderbar. Again
pictures on FaceBook for anyone interested
I continued the ADT with Zoladex
shots in February and May after PSA results of 2.9 and 3.4 in February and March
respectively. I have to say that I was somewhat depressed by the slight rise in
the February PSA result and I went back to the oncologist to discuss with him
the option of changing from Zoladex to one of the other ADT drugs - or even DES??
He still would not talk about DES and was still of the view that focussing too
much on PSA results at the levels. I was talking about was counter-productive.
His advice was, as it had been on my initial meetings, to have an annual PSA if
I must, but rather wait to see if any symptoms developed and then tackle the disease
I read through my story and my results and realised that this was
in line with my original thinking nearly fifteen years ago and that I had gradually
been sucked into the "PSA anxiety" that affects too many men diagnosed with prostate
cancer. So the plan was to have the next test some time in 2012 because I had
a cruise or two to do before then, not to mention another celebration in South
Africa when my niece marries shortyl after my 'best before' three score years
and ten birthday.
a bout of depression and fear of Nemesis descending to punish my hubris and more
challeneges to my theories on the Internet - and my doctor failing to remember
thatI needed a Zoladex shot led me to change GPs and to find an oncologist I could
am happier with both than I was with the previous providers. I decided, with the
help of my new oncologist to stay on the Zoladex, but when my PSA went from 3.4
in March 2011 to 7.1 in April 2011 and then to 15.5 in November 2011 (he had suggested
for my ease of mind we kept up the quarterly PSA tests), we added Casodex to the
drop to 5.8 in February 2012 looked as if it might be promising, as did the April
2012 result of 5.9, but I was less happy with the July 2012 result of 8.7 the
week before my appointment with my oncologist. He felt that we should keep an
eye on things, but not change medication for the moment. As he said "We were
trained not to treat numbers, but diseae and indivduals. There is no indication
yet, apart from the numbers, that you need any more drastic therapy." we
did agree that DES would be a connsideration if another mo ve was justified.
that's my story to date. I am still content with my decision to choose not to
have conventional treatment. That choice is not for everyone. In some cases the
diagnosis is not suitable, in others the man is not equipped psychologically to
handle what is seen as the uncertainty of not taking immediate action. When I
made my decision there was very little support for this choice so it is good to
see the support gradually grow for what is now termed Active Surveillance as more
evidence accumulates - the latest being the data published from the large PIVOT
study - that for appropriately diagnosed men, this may be their best choice.
many men who choose conventional treatment over conservative management do not
seem to realise is that everyone diagnosed with the disease will have to practice
some form of "watchful waiting" because no current conventional treatment guarantees
a cure. That means the uncertainly associated with the possibility of progression
is present in us all, not matter what our choice of treatment. Those who choose
conservative management do however avoid the only certainty connected with this
disease - the certainty of side effects associated with all current conventional
As I said at the time I made my conservative management decision,
I aimed to make it to the first fence of 10 years, and I did that in August 2006.
But I felt I would really only know if the decision was the best one for me 20
years after diagnosis. I'm more than three quarters of the way there now as I
have entered my sixteenth year. As long as my heart problem or some other disease
or event doesn't 'cure' my prostate cancer it looks as if I may make it after
MELBOURNE, 25 July 2012