Terry
and his wife Anthea were living in Kalk Bay, South Africa when he was diagnosed
in August 1996: they now live in Melbourne, Australia. He was 54 years old - said
to be "young" and his initial numbers were PSA 7.2 ng/ml, Gleason 3+3= 6 Stage
T2bN0M0. 
Here
is his story:
Like most people, the diagnosis sent me and my wife into
a bit of a spin, especially as the local urologist didn't even mention that there
was more than one option for treatment. He had me booked in for a Radical Prostatectomy
before we knew what was going on. And he sent me for tests which, from what I
have now learned, were absolutely unnecessary. My already low opinion of the medical
profession sank another couple of degrees.
Let
me just qualify that - I don't think that most doctors, as individuals, are bad
or incompetent people. I just think that the paradigm in which they operate precludes
them from dealing with their patients as people, not a collection of symptoms.
It also makes them extremely conservative and closed to anything new.
When
I was diagnosed, I was just about to set off for a trip to Australia and Papua
New Guinea, returning to South Africa through London, so I had plenty of time
to read on those long flights. By the time I got back home I was pretty well convinced
that RP was not for me and although it wasn't the worst option - chemotherapy
takes that prize in my book - there were better ones.
One
of the books I read was on the Bristol Centre in UK which dealt with matters such
as diet, meditation, visualisation, faith and so on. Much of this tied in with
the material which an old colleague had given me and it made a lot of sense to
me and to my wife. So we made the decision to start to change our diet and our
habits - not with a huge lurch, but steadily. The main issues identified at that
stage [apart from stopping smoking, which we had done some years previously] were
basically those listed below, although I have expanded the original list to include
other aspects which we added as we gathered more information.
It represents my current regimen:
reduce intake of meat, specifically red meat, ideally becoming
vegetarians;
reduce
intake of dairy products and fats;
cut
down or out irritants such as coffee and spirits;
pay more attention to dietary requirements – more fruit, fresh
vegetables etc;
take vitamin and mineral supplements – Vitamin C being a major
item; take anti-oxidants;
increase exercise levels [I walk my two dogs over the mountains
behind us for a minimum of an hour a day and usually longer] and to lose weight
[I lost about 15 kg, but I needed to];
meditate
and “weed the spiritual path”;
reduce stress;
create a visualisation of the disease and its effects;
take
some prostate-specific herbs, such as Essiac.
Simplistically,
my whole approach is based on the premise that in normal circumstances, the body's
immune system and other mechanisms will deal adequately with cancer. The diagnosis
of the cancer is an indicator that the system has failed and it is therefore important
to create an environment where the system can get back to do the work it is designed
for.
I
have found the material about visualisation, which recurs in so much material
dealing with cancer therapies, interesting. In my case, I relate my body and my
cancer to an overgrown garden - probably because the house we are now in had such
a garden when we bought it three years ago. It takes a lot of hard work to rectify
an overgrown garden - and a lot of time. Persistence is the name of the game.
That
is how I see my onslaught on my disease - there is no doubt that the spontaneous
remission of some cancers can take place in a very short time.There is a good
deal of anecdotal material which tells of such regressions occurring overnight,
and these are supported by a more limited number of medical testimonies. But because
prostate cancer is a slow growing tumour, I do not expect it to retreat any quicker
than it grew. It is difficult to find any reported cases of remission of prostate
cancer but, as I said to a urologist in Houston, this is because the average time
from diagnosis to removal, in the U.S. is six weeks - hardly time for the remission
to take place!! He wasn't really amused. Although I had been prejudiced against
an RP with my early reading, I only arrived at the final conclusion that I would
pursue this alternative path over a period of some months. Initially my research
was on the basic information on the disease and the treatments available. The
"hard copy" statistics I found at first seemed to support the "golden standard"
of RP surgery.
But
once I got onto the Internet and started digging up more up-to-date information,
there were some indications that these figures might not be as accurate as they
pretended to be. It soon became apparent that they were badly skewed to support
the medical contention that RP was really the only option. In fact the more I
read, the more I came to the conclusion that there was very little difference
in survival rates [which I think are much more positive than mortality rates!]
between the various treatments, doing nothing or not having cancer! In fact I
found one paper which gave better survival rates over a ten-year period for men
diagnosed with cancer than for the general population of men the same age. That
seemed fairly encouraging, especially as survival rates were of the order of 80%
- 90%. I even visited, in this exploration, sites which gave an opposing view
of alternative medicine. I felt I had to look at the other point of view - anyone
interested can visit the Quackwatch website (to
be found here) which is run by a retired doctor, and form their own opinion
as to the value of the information there.
I must say that it has not been easy following the path we have chosen.
There
is very little support for (Watchful Waiting/Positive Onslaught While Watching)
from friends and relatives and virtually none from the medical profession, although
I eventually found an oncologist who said he thought it might not be a bad idea,
and a holistic doctor who helped in the early stages. But even subscribers to
support and chat sites (on the Internet) still have some reservations and disagree
with what I am doing. So it is a lonely path and, naturally, I ask myself often
if it is wise to continue, especially when the odd ache or pain strikes - things
which one would normally take in one's stride as merely a function of growing
a little older, or having exerted oneself too much, loom into my thoughts as "Is
this a spread?"
But
apart from that, mentally and physically I am better than I have been for years
and I enjoy each day more than ever before. A guest on an Oprah Winfrey show I
saw years ago said that it was an unfortunate aspect of life that everyone needed
a life-threatening experience to really appreciate how good life is. I agree with
that!! Prayer and faith in the Supreme Being and your body's ability to cure itself
are enormously potent tools, I believe.
[Update
26 February 2001]
It is over four years since I was diagnosed in August 1996. I am glad that I made
my decision not to have conventional treatment. If I were to present for an examination
today, I would not be diagnosed as having prostate cancer. I say this because
my PSA has stabilised at around 5.00 ng/ml, which I regard as normal for a man
of my age with BHP. My free PSA has been consistently at about 30% in recent tests
- up from 20% at the first occasion when this test became available. My last DRE
was normal - apart from the BHP.
I
cannot claim to be cured because there is no definition of cure for the path I
have taken and I am not sure that any doctor would even say that I was in remission.
But I am in better health than I was when I was diagnosed and there are no signs
of progression of the disease. That's good enough for me. My garden is also looking
much better and I have just about eliminated the weeds from the lawn - not by
weed-killer, but by getting the grass so healthy it will not allow the weeds to
grow.
I
have learned a good deal in my journey so far. I am more convinced than ever that
the majority of men (especially in the United States) who are treated for prostate
cancer by radical prostatectomy and radiation do not benefit from their treatment
in the long term. I am not alone in this view. There are many organisations and
medical people who also feel that way. There are some indications that there is
a movement away from treatment which is too aggressive. One of the leading institutions
in the US has defined what they call "insignificant" tumours and suggested that
they be watched for further development rather than treated immediately. The definition
is:
Another
very important issue which is not properly understood by many medical people is
the inaccuracy of the PSA test. Whilst this remains the best indicator of anything
going wrong with the prostate, care should be taken in accepting a single PSA
reading as the results can change significantly in a short time for no apparent
reason. I undertook a small experiment in July of 2000 which can be viewed
here.
In
this experiment I tested my blood for 28 consecutive days whilst trying to keep
the PSA levels stable. The lowest reading was 4.50 and the highest 6.00 and they
were two days apart. That was an increase of 33%. Three days later the reading
had fallen back to 4.60, a reduction of 25%.
There
is no doubt in my mind that the number of men who need to take immediate action
is very small. This does not mean that such men should do nothing, but it does
mean that they have time to research their options and to decide what is best
for them.
[Update
20 September 2001] Current Age = 59; Current PSA = 5.74.
Current
Treatment = WW. Now it's five years down the line and all seems still to be going
well. Although I was confident of this, my darling wife, with her Master’s Degree
in Worry and Concern asked me to get a checkup with a specialist.
So I went to see a leading urologist who very sportingly agreed to examine me
without the benefit of seeing my medical history. After completing the examination,
including the DRE (Digital Rectal Examination), he said that he could feel nothing,
apart from the BPH (Benign Prostatic Hyperplasia) which was diagnosed 10 years
ago.
He
suggested I get a PSA test, so I gave him my latest one which I had done a fortnight
before the consultation. It was 5.74 ng/ml and had a free PSA component of 48%.
The total PSA was within my “normal” range and the free PSA was excellent. He
was amazed to then discover that I had been diagnosed five years earlier and after
discussing what I had been doing since my diagnosis, his only comment was that
I should keep on doing what I was doing.
I
had intended to do that anyway, but it was nice to achieve SILVER status on this
site and get official confirmation at the same time!!
[Update November 2002]
There
is not much to say in this update. I had my annual checkup in September. My total
PSA came in at 5.88 ng/ml almost the same as it was last year and my free PSA
was 38%, down a little from last year, but still in the high range.
So,
I'll carry on doing what I'm doing - seems to be working so far.
[Update October 2003]
Not
much to report. Annual DRE still negative. PSA up a tad to 6.25 ng/ml with free
PSA stable at 38%. I had a business trip to the Toronto in September and was very
tempted to go and see Dr Fred Lee with his colour doppler diagnostics. I decided
against it in the end, mainly on the basis of cost, which would have been very
high for me. I also felt that it was unlikely that he would be able to tell me
anything without another biopsy - and I do not intend to have another. So, I'll
just carry on doing what I'm doing.
This
year I have set up a Watchful Waiting/Conservative Managment site. It is still
very much in the course of construction, but there is quite a bit of interesting
material on the site. You'll find it at Prostate
Cancer Watchful Waiting . If you do call on the site, I would be very interested
to have any comments, especially if you are researching this optional approach.
[Update June 2004]
The BPH (Benign Prostate Hyperplasia) with which I was diagnosed in 1992 started
playing up last year. 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, including 5 weeks and 5,000 miles in the US 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 Watchful Waiting/ Conservative Management - 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 diagnosis.
Anyway,
be that as it may, I was having many problems, mainly with nocturia and finally
swallowed my pride and went to see my uro, who suggested we try Flomax. 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. My PSA also showed an increase, going
up to 8.55 ng/ml, although there was still a free PSA of 42%. This all created
a bit of a quandary, as we are off to the island of St Helena next month (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.
The
uro 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 I had been having. So I bit the bullet and agreed to a
TURP (Transurethral Resection of the Prostate), which I had last Thursday. Although
it is early days, everything seems to be going 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. I had the histology
report faxed to me yesterday and although I will be seeking some expansion on
the information given, basically it states that the Gleason Scores on the tissue
examined is 3+3=6 (which was my original diagnosis) and there is about 20% of
the material from the TURP that contains evidence of invasive primary adenocarcinoma.
It
seems to me that this shows evidence of some growth over the years, since the
volume is probably higher now than it was, but no evidence of increasing aggressiveness.
If that is the case, then I'll continue what I have 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.
[Update January 2005]
Well,
I may have to change my plan after all!
I
say that because my PSA results post TURP are disappointing. The first was in
September. 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.
This
has left me in something of a quandry. I intend to take a course of antibiotics
first, on the basis that there may be some infection. After all, there were small
bits of prostate gland coming out with my urine for some months after the TURP.
One of those lodged in the gland may be causing a problem. If, after that there
is another significant increase, then I will have to assume that the disease has
metastasised and take appropriate action. Just what that will be will depend on
the advice I get over the next month or two.
[Update April 2005]
I
took the antibiotic but it hasn't prodcued the desired result. My latest PSA,
taken on 19 April was 17.44 ng/ml fPSA 4.93 ng/ml 28%.
So,
what does this all mean? Darned if I know if it is an indication of failure of
primary treatment, which sees me with metastasis on the way, or if it is still
a lingering infection. I have had an odd feeling, not pain so much as pressure,
in my groin since the op which I have mentioned to the surgeon and which he carefully
puts in his notes, but doesn't comment on. Could it be that or is that wishful
thinking?.
The
points that puzzle me are:
1.
My understanding of increases in PSA associated with metastasis is that they rise
progressively: as a corollary to that variations - rises and falls - in PSA values
are often associated with infection or disease. In my case an initial doubling
time of three months from June to September might reasonably predict a PSA of
about 30 ng/ml in April, yet the actual result is 17.44 ng/ml - an increase of
18%. Does this mean that it is more or less likely that the increase is due to
underlying infection than metastasis?
2.
Although most studies of fPSA relate to total PSA levels under 10 ng/ml, there
are some European studies that indicate that fPSA levels are still valid up to
20 ng/ml. There has been considerable fluctuation in the fPSA ratio over the past
nine months and in fact the total fPSA has increased from 3.07 ng/ml in September
to 4.93 ng/ml in April. Does this mean anything? Normally fPSA ratios at the levels
recorded are indicative of non-tumour expression.
I'll
be talking this all over with the oncologist I consulted eight years ago, who
went into research and is now back in practice, if he and I can find time to get
together! In a typical example of Murphy's Law operating, this little potential
crises of mine has arisen at a time when we have the house on the market prior
to our re-location to Australia and when I have no less than three business (and
pleasure!) trips planned which will see us at home for only six weeks in the next
four months - and during 10 days of those six weeks we'll have overseas guests
staying with us. Not that I'm complaining, mind you. Carpe Diem is still
something I believe in.
[Update June 2005]
The
May PSA was up again, a little, to 20.44 ng/ml, but then so was the fPSA - to
29%! I went along to the oncologist who suggested we start with a bone scan, which
would be testing the worst case scenario first. I had the scan a couple of days
ago - great improvemnt 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.
The
oncologist feels the nex step should be a CAT scan, even though these are not
great at identifying tumours. I'll do that, with his approval, when I get back
from the Australian trip at the end of July.
[Update August 2005]
Well,
I'm back from Australia. We bought a nice townhouse there and have sold our house
here in South Africa and all being well, we should be on our way in mid-October.
Of course there is a tremendous amount to do - moving house is never easy, but
the difficulties multiply when you're moving countries as well.
In
all the rush and bustle I only got my PSA test done last week and regrettably
it is up again, to 24.9 ng/ml, still with a free PSA of 6.47 ng/ml or 26%. Clearly
action is required now and I will be seeing my oncologist as soon as I can get
an appointment. I am also seeking advice from all my cyberpals on the Internet,
but unless anyone can show me why it would be foolish to do so, I intend embarking
on a 'DES Lite' regimen.
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-emoloc 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.
I'll
keep you'all posted if and when there is anything to report.
[Update December 2005]
We
are settled here in Australia now and I finally saw a urologist on Monday and
an oncologist on Tuesday after getting a PSA test - result 26.5 ng/ml virtually
the same as in August. Unfortunately the oncologist is 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.
The
crux of the matter is simply this, to summarise the oncologist's advice:
If
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 am 'so young' at 63 he wouldn't like to consider
this option.
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 most.
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 makes my
expiration date about ten years from now!!
As
I've said before over the years, I'm not recommending my line of thought and action
to anyone else. Merely expressing my somewhat contrarian views. I'm going to have
a PSA in three months and then if it is still up or rising significantly I am
going to speak to a medical oncologist about the possibility of hormone treatment.
[Update January 2006]
Just
a slight change of focus!! I have been developing some breathing problems over
the past few months. Nothing too drastic, or so I thought. A bit of shortness
of breath when walking with the dogs up hills and, more annoyingly, waking up
in the early hours of the night feeling I was choking. I put the former down to
a loss of fitness during our move and the latter to the various stresses of the
move.
However,
things were not getting any better and I finally went around to see the GP who
said I had an irregular heartbeat and prescribed a series of heart tests, scheduled
for three weeks time. That night I had a dreaful time and really thought my last
days might have come as I battled for breath. Back to the GP, he ordered a chest
X-ray and an ECG and prescribed an asthma "puffer" to help me breathe.
By
chance an old pal called later in the day. He was our GP when we were first married
35 plus years ago and recently retired. He was alarmed at my voice and asked me
what was going on. I told him and his immediate reaction was that my wife should
get me around to the ER at the local hospital as soon as possible. I thought it
was an over-reaction, but did as I was told. The staff at the ER didn't take it
lightly, admitting me, putting me on oxygen and getting down to the first in a
long series of tests. Ten days later I concluded all the tests and bed rest and
was diagnosed with atrial fibrillation and idiopathic cardiomyopathy, moderate
to severe. To put that in lay terms, the top of my heart is beating in an irregular
fashion, causing a strain on the rest of the apparatus and there is damage (cause
unknown) to my left ventricle, leaving me with an enlarged heart that doesn't
pump too well.
I'm
told the outlook is pretty good as long as maintain the medical regimen that has
been set, which of course I will do, but I must say it came as a bit of a surprise,
since i didn't see myself as a candidate for heart failure!
As
soon as I get this dealt with I'll be back to my PCa related issues, but first
things first!
[Update March 2006]
With
tooth and heart problems now under control, I finally got back to the PCa issue
and had a PSA test last week. I was really curious to see how it would turn out
because of what an old 'cyberpal' of mine, Al, told me a month or two back. He
recounted how his PSA had started rising. like me, he was not convinced that the
rise was due to his diagnosed tumour and, most coincidentally of all, he had a
periodontal disease.
Now I haven't mentioned my tooth problem before this, but a most peculiar set
of circumstances arose soon after we got to Australia. My incisors and three of
my molars were found to be rotten to the core. This was a shock to me because
I had seen my dentist and his hygienist regularly in South Africa and in fact
had a full inspection the week before we left. And yet a mere eight weeks later
I had this problem. I saw an escalating series of dentists, each more specialised,
but none of them could tell me how this damage had occurred - all were in agreement
that it was not possible for it to have happened in eight weeks, despite the evidence
to the contrary. Truly, medical paradigms are hard to overcome. Nothing could
be done with the Christmas holidays fast approaching - Australia closes down from
about the middle of December until the middle of January - but we agreed that
the teeth would have to go early in January. Of course I was in hospital then
with my heart failure, but I had the molars out as soon as I could after my discharge.
Why
this long and apparently irrelevant story? Well, I am not sure that it is irrelevant
because, with the teeth out, my PSA has dropped dramatically from 26.8 ng/ml in
December last year to 17.4 ng/ml - almost 10 ng/ml. And this is virtually what
happened to Al, whose PSA was not quite as high as mine, but which halved after
his tooth extractions. Maybe a coincidence; maybe the antibiotics that we each
had to take for the dental work; maybe the effect of the medication for my heart
condition; whatever the reason, I'll take a falling PSA against a rising PSA any
time.
I
have a new GP who is happy with my decision to not pursue conventional treatment
at this time. He and I wrote a Health Plan this morning and the line regarding
PCa says: "To keep living and let another disease be our worry." That's not quite
what I suggested. I said I wanted to keep living until I died of something else,
but I guess that was a bit too direct for the doctor!
In
my tenth year, and earning Gold status on this site. I reckon I could meet the
first of my old goals - to live ten years after diagnosis - in August this year.
[Update June 2006]
Time
for another PSA test.
As
I said before, I was hoping for another fall, with my cardiomyopathy and periodontal
problems apparently under control. But it was not to be. The number that came
in was 24.3 ng/ml - about the same as it was in July last year.
Regrettably,
although a Free PSA test was ordered, the lab did not do it. My new MD didn't
notice and, as he freely admits that he knows nothing about fPSA, he didn't agree
to getting another test done just yet, so I guess I will have to wait until August
or September.
Until
then, I'll carry on carrying on.
[Update August 2006]
Latest
test is a bit disappointing, coming in at 27.4, just a tad above December last
year. Once again, although a free PSA was ordered, it wasn't delivered. This time
I queried it with the lab who initially said they didn't do fPSA tests with tPSA
levels over 20 ng/ml because there was no value in that. When I pointed out that
there were studies that demonstrated a value, they changed their tune and said
their machines couldn't do a fPSA number if the total was over 20 ng/ml. Time
to look for a new lab, I think.
Anyway,
no dramatic change = no dramatic change in protocol. More doing what i've been
doing - and concentrate on getting the heart right.
I
celebrate the first of my major targets this month - 10 years of survival post
diagnosis. Ring them bells!!
[Update February 2007]
It
looks as if I won't be able to depend on the heart problem 'curing' my prostate
cancer after all. All reports from the cardiologist are that the regimen I am
on has produced a semblance of normality so that I can get on with my life.
The
story on the prostate cancer side is not quite as good. 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 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 acerbated 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 think it may well refer to that, but decided to see an oncologist to get a second
opinion (the first being mine!!). 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 have agreed to have another
scan in three or four months and if there is a significant change may consider
some form of ADT (Androgen Deprivation Therapy). Essentially he believes, 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? !
[Update June 2007]
Well,
what to do? Where to go?
I
have just returned from my 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.
I
still haven't had the second bone scan. I really don't like nuclear medicine -
the thought of ingesting radioactive material just isn't one I fancy. I guess
I'll have to bit the bullet sooner or later, but am investigating a new type of
scan that may be available from the local hospital to see if it will be more accurate.
Still
no symptoms: still feeling as good as a man of my age might expect to feel!
[Update July 2007]
Well,
I finally got around to the second scan after investigating the possibility of
a PET scan. The general view was that this would not show any more information
than a normal bone scan plus CT scan would reveal.
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."
The
explanation 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 feels that it certainly seems likely to be a metastasis and most probably
accounts for the rise in PSA - which has doubled since May 2005 - and I reckon
that is most likely so. He suggested that I speak to a radiologist about the wisdom
of radiating this lesion before we consider ADT (Androgen Deprivation Therapy).
The onco suggest a 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.
The
radiologist 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.
So
that effectively leaves me with the hormone therapy and since I believe now, after
talking to a number of local doctors that there is no way I'll be able to have
my preferred option of diethylstilboestrol (DES) or estradiol patches, I'll just
have 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 is what particularly that concerns me. Anyway I'm seeing the cardiologist
tomorrow to see what he has to say about any potential problems with my heart
medication. the oncologist says "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!! - next July.
[Update October 2007]
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 have had
no serious side effects that I can notice. A bit of a tendency towards a feeling
of sadness at times perhaps, but that's about it.
On
the positive side, the first PSA test, three weeks or so after the first Zoladex
shot showed a very satisfactory drop from 42.0 ng/ml to 12.4 ng/ml. That was encouraging
and the second PSA test, two months after the treatment commenced has shown the
PSA at 3.00 ng/ml.
My
GP, who really doesn't have much of a clue about prostate cancer, or PSA always
orders a free PSA test, which I'm happy to go along with as I am intrigued by
what this might or might not show. On the latest results, my fPSA is 2.0 ng/ml!
What do you make of that?
Next
Zoladex shot is in a month's time. Stand by for reports on that!
[Update January 2008]
Well,
had my second Zoladex shot, which stung a bit more than the first - maybe because
I've gone on a full scale weight loss program and am now down 20 kg (say 44 lbs
or a bit over 3 stone depending on your place of residence) so there isn't much
fat to plant the depot.
My 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 I got today - 0.60 ng/ml. That's more like it.
Maybe I'll make it to twenty years after all - if the heart failure doesn't 'cure'
me. It has been awfully hot here this summer - temperatures of up to 42C (that's
about 108F for you non-metricated folk) and that really knocks me around - thank
goodness for air-conditioning.
I'm
having one more Zoladex shot next month and then, if there is another downward
blip, I intend giving it a rest (with the blessing of my oncologist) to see what
happens. Will let you know in due course.
I
have just completed a chart showing my PSA over the past 11+ years. It shows graphically
(literally!!) what has been happening. Here it is:
[Update March 2008]
A
good result! Down to 0.20 ng/m just before my third (and last for the present)
Zoladex shot. I'm going intermittent unless something really unusual happens.
[Update May 2008]
I
was a bit disappointed with my latest PSA, which is still on 0.20 ng/m. I really
thought i might get down to undetectable. Oh well! Can't win them all. My GP feels
it is better to have another Zoladex shot, and I guess that's so - I'll be having
that next week. I am having some slight side effects developing. I'm losing body
hair, my skin is softer and I'm having difficulty in maintaining my weight. Hopefully
that won't get worse.
We've
had to can our planned cruise in July - hurt by the damage done in the financial
markets, but instead we're planning to go to Italy in September. The son of old
friends is getting married then so the idea is to go to the wedding then spend
a couple of weeks just driving around wehrever the road takes us.
[Update August 2008]
Almost
12 years to the day, 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 the good result. And how ridiculous
to be happy that it is lower than the last one, given the inaccuracy of the test.
But I am.
I
guess that's as low as it will go, bearing in mind I still have most of a very
large prostate gland. Good enough to go Intermittent - and that's what I'll be
telling the GP tomorrow when I see him. Even though he disagrees, Anthea and I
had a good chat about the options and believe this is a good one for us.
With
only four weeks to go before we leave for Italy, I have to get back to my Italian
vocabulary lessons.
[Update December 2008]
We
had a wonderful time in Italy. Drive 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 here: Italy
1 - Siena, Pisa, Venice, Lake Garda, Castelfranco: Italy
2 - Sansepolcro, Tuscany: Umbria: Italy
3 - Urbina, Orvieto, a weekend in a villa near Rome : Italy
4: Praiano and the Amalafi Coast
I
had my PSA test last week and it came back as 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 100 gm - roughly four 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.
My
GP was happy - but not really concentrating as he and his family are heading off
for their first trip overseas and are all very worried about the state of the
world and the possibility of being caught up in terrorist actions. We all have
our different concerns.
Well
meaning cyberfriends on Lists and Forums have urged me to take action, but, as
I have done since the start of this journey, I'd rather collect a bit more evidence
of necessity before doing anything more. Next PSA in February!
Terry
's email is: ghenesh_49@optusnet.com.au
