Six
Gleason lives in England. He was 57 when he was diagnosed on November 6, 2007.
His initial PSA was 5.4 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c.
His choice of treatment was Active Surveillance. Here is his story.
I
am 59 years old, married with 2 children and live in the south of England. Back
in 2005 I happened to read a magazine story about Prostate Cancer and recognising
some of the symptoms (specifically those to do with urinary flow not being what
it was) I decided to visit my GP. He consequently carried out a DRE and arranged
for me to have a PSA test. Nothing untoward emerged from this and I was later
informed that my PSA reading at the time had been 1.9, exactly the same as it
was when I had a full medical check-up in 1999. Vaguely reassured, I saw no reason
to take further action and let it go.
By September of 2007 my original
symptoms had deteriorated to the point that I was regularly getting up at least
2 times a night to take a pee. So I went back to my doctor and demanded another
PSA test. A couple of days later he telephoned me at home to say that the reading
had come in at 5.4 - probably nothing to worry about, but to be on the safe side
I should have a biopsy at my local hospital. I was surprised to be given an appointment
for this within a week. The process took about 20 minutes and was no more than
slightly uncomfortable, though it was a little disconcerting to notice a trickle
of blood on my thigh as I rose from the treatment couch. Nor was I fully prepared
for the amount of blood which was later to emerge in my urine and semen.
NOVEMBER
6th 2007
About 3 weeks after the biopsy (rather a long time to be sweating
on the possibility that I might have Prostate Cancer) I attended an appointment
with my consultant urologist who informed me that they had indeed found evidence
of early stage cancer in one of the 14 core samples they took. I had to press
him quite hard for the relevant details but was eventually told that the core
depth would have been 10 -14mm and the focal area was 1.1mm, so I guess that equates
to roughly 10% involvement. However, since Prostate Cancer was multi-focal he
said there was a good chance that other areas of the gland may also be affected.
Whilst making it very clear to me that the final decision was mine alone, the
consultant gave the impression he would have been quite happy to schedule me,
sooner rather than later, for RP surgery - which I remember him describing as
the "gold standard" treatment for PCa. I told him I'd think about it.
Later
that afternoon when I informed my wife I had cancer, at first she didn't believe
me but gradually realised I was being serious. I assured her that whilst I would
probably not be dropping dead in the near future I might soon have to have an
operation that could have some very unpleasant, and probably very permanent, side
effects. The next few days were quite difficult as the reality of my situation
started to sink in, but even before the diagnosis I'd started the process of researching
the disease on the Internet as I've always believed that the more you know the
better placed you are to make the right decision.
My first ray of hope
came when I stumbled across the website for a private clinic specialising in laparoscopic
keyhole surgery. Looking through the testimonials provided by their numerous happy
customers, suddenly the prospect of Impotence and Incontinence didn't seem quite
so inevitable. Unfortunately I had discontinued my medical insurance a few years
earlier, and soon discovered that the operation would have cost me around £12,000
plus aftercare. Of course, I know now that the advertisement, was, like most advertisements
of its type, somewhat misleading, but at the time it was exactly what I needed
to drag me out of my depressed state.
My second trip to the hospital had
been for a routine MRI scan which, according to my consultant, hadn't revealed
any unexpected complications. He also gave me the result of a follow-up PSA test
(taken less than 6 weeks after the biopsy). Unsurprisingly, it had risen to 9.7.
I told him that I still hadn't come to any firm conclusions about what kind of
treatment regime I wanted to pursue but would give it some thought over the next
few months.
By the end of November I was already becoming less enthusiastic
about keyhole, or any other form of surgery, and starting to concentrate instead
on HIFU, in particular a clinical trial that was being conducted in London whereby
rather than zap the entire Prostate they just treat the affected area. This seemed
less invasive that the other options I'd been looking at and therefore (in theory)
carried a lower risk of the side effects we all dread.
In the meantime
I had decided to join my local PCa Support Group and attended their Christmas
lunch in mid-December. I remembered the consultant commenting that, at 57, he
considered me very young to be diagnosed with Prostate Cancer and walking into
that Hotel Banqueting suite I could immediately see what he meant. Nearly all
of the men there would have been a good 10-20 years older than me. They were a
friendly enough bunch, but although we nominally shared the same disease we had
little else in common. They were much further down the road than I, and had already
had Radiation Treatment or were on Hormone Therapy. A couple of the men I spoke
to seemed quite angry that, despite displaying all the classic symptoms, it had
taken so long for their GP's to refer them to a specialist - by which time their
PSA readings were up in the hundreds or even thousands. One thing I learnt from
my three visits to the PCa Support Group was that even men with advanced Prostate
Cancer are able to live happy and productive lives - often for a good few years.
I
can't recall exactly when or how I came across the YANANOW website but I am in
no doubt that it has been the single most useful resource I have found, not just
in terms of researching the various treatment options available but more importantly
in being able to read literally hundreds of real-life case histories, written
not by a highly paid surgeon hoping to drum up some extra business, but by men
who want to communicate and share their personal experiences of Prostate Cancer.
I've no idea how many of these stories I've read over the past couple of years
(suffice to say - a lot!) and can only express my gratitude and admiration to
everyone who has taken the trouble to contribute. It really does make a difference.
2008
At
this stage I was still expecting to undertake some form of PCa treatment within
the first 6 months of the New Year but wanted to hear as many opinions as I could
before making a decision. So in quick succession I attended a series of appointments
with: Private HIFU man, Laparoscopic Keyhole man, and finally HIFU Clinical Trials
man. They all agreed that I had very early stage Prostate Cancer (T1c Gleason
3 + 3), and, like the consultant urologist at my local hospital, expressed their
willingness to treat me. The distinguished consultants all seemed to know each
other, either personally or by reputation, and each spent time trying to convince
me why their approach was the correct one. Sometime in February I received the
result of my third PSA test and was pleased to see that it had dropped to 6.6.
In
the end I decided that the best option for me to pursue would be the HIFU Clinical
trial. Prior to the HIFU treatment itself I would have to have another MRI scan
followed by a Template Mapping Biopsy - both apparently using state-of-the art
equipment. My MRI scan took place on March 10th and when chasing up the results
a couple of weeks later was told by email that: "essentially the MRI looks fine
- there were a few areas that looked slightly suspicious for cancer, but nothing
overt". So much for state-of-the-art technology! But at least it wasn't bad news.
My
next appointment was in June when I attended a pre-assessment clinic to make sure
I was fit enough to withstand the general anaesthetic required for my forthcoming
Template Mapping Biopsy. This seemed to go smoothly enough and I was given yet
another PSA blood test, which came in at 4.89 - slightly below the original reading
that had prompted the phone call from my GP 6 months previously. Even so, I wasn't
entirely comfortable with the idea of repeated biopsies (a follow-up biopsy would
have been required after the HIFU treatment to verify that any cancerous areas
had been eradicated, and this would have made 3 in the space of less than 18 months).
I remembered reading something - probably on YANANOW - suggesting that: if a cancerous
Prostate were to be repeatedly punctured by needles, isn't there a danger that
some of the cells might escape and cause the situation to become a whole lot worse?
I'm no urologist but to my simple way of thinking this didn't seem by any means
implausible. A series of email exchanges with my Support Nurse did little to address
the questions I'd posed, but I did manage to speak to a man who had already participated
in the partial HIFU Clinical Trial and he seemed very pleased with the results.
Having said that his cancer had been at a more advanced stage than mine so perhaps
he had less of a decision to make than I felt I did.
The main difference
between the Template Mapping Biopsy procedure and the normal spring-loaded affair
is that rather than taking 12 or 14 core samples via the colon they take about
80 via the perineum - or at least in my case they did. This is quite a big deal
and explains why a general anaesthetic has to be used. Even so you are given the
impression that patients whose operations are scheduled during the morning are
normally able to go home later the same day.
My own procedure was carried out
at around lunchtime and I remember waking up in the recovery room feeling a little
groggy but not too bad considering. I even managed to stagger the few yards to
the WC to see if my waterworks still worked. Luckily they did, though I later
found out that the man in the next bed to me wasn't so fortunate and had to be
catheterised.
It was probably not much later than 2pm when I got back to
my ward, where I was given a sandwich (devoured ravenously) and a large jug of
water. The hospital won't agree to discharge you until they're satisfied that
the amount of blood in your urine is at an acceptably low level and within an
hour or two it had become pretty obvious that I wouldn't be going anywhere till
the following day. To be perfectly honest I didn't want to. A large bandage had
been taped to my crotch to protect the 80 little puncture marks and I was warned
not to risk bathing the area for at least a week. My night in hospital was long,
sleepless and punctuated by numerous trips to the WC to expel the endless cups
of water I had been told to drink. The next morning a nurse changed my bandage
and eventually the doctor was happy enough with the colour of my urine sample
to allow me to call my wife.
She arrived sometime in the middle of the
afternoon and although it was a Sunday there was quite a lot of traffic around
and when we eventually got back home I just about made it to the bathroom in time.
Of course one of the symptoms of having an enlarged (and at this stage probably
quite swollen) prostate is that it is often necessary to take a pee two or three
times an hour, especially if, like me, you are told that you must drink several
litres of water per day. Not only that but a paltry 300ml of urine can make you
feel as if your bladder's about to explode.
The first two or three days
of my recovery period didn't seem too bad. The previous biopsy had given me some
idea of what to expect in terms of bloody residue, but I never felt the need to
use the painkillers that I'd been given. Probably the thing that had shocked me
most was the amount of external bruising, which by now had spread to my thighs
and buttocks. By the end of the first week I had expected to be over the hump,
but if anything, felt slightly worse than when I'd first got back from the hospital.
The main problem was lack of sleep. I found that rather than once or twice I was
getting up three or four times a night and rather than spending a minute or two
in the bathroom it was more like ten or fifteen minutes struggling to create enough
pressure to move a few stubborn millilitres of pinkish fluid the short distance
from bladder to toilet bowl. And it stung - by no means "fish-hook / razor blade"
agonising, but not very pleasant either - at one point I took myself along to
the hospital A&E department to be checked out for a urinary infection, and they
sent me home with a fresh supply of antibiotics. Eventually (I'd say about 2-3
weeks later, during which time I'd been faithfully practising my Kegel pelvic
floor exercises on a daily basis), the bruising subsided, the stream became clearer
and the flow became stronger - not great, but probably much the same as it had
been pre-Template Mapping Biopsy. The next thing I wanted to know was what new
evidence had been gleaned from my 80 slivers of Prostate gland?
Although
the operation itself had been carried out in late July I didn't get to see my
Clinical Trials consultant for a follow up appointment until September 24th, however
I did receive a phone call from the Support Nurse to say that only one of the
core samples had been found to contain a small amount of cancer. This was fantastic
news. If anything I was expecting them to have discovered at least one more affected
area or perhaps to have decided, upon reflection, to award me a higher Gleason
grade.
Throughout the year I had been continuing to read more and more
YANANOW case histories and by now was starting to lean towards the idea of Watchful
Waiting / Active Surveillance. All the available evidence pointed to the fact
that I was probably in the very early stages of what might well be a non-aggressive,
slow-growing cancer that might take another 20 years or more before it became
life threatening. I deliberately say "probably" and "might" because we still know
far too little about the disease to take anything for granted.
So, approximately
12 months after my visit to the GP, I sat down in the consultant's office to discuss
my options. He said that if I still wanted to participate in the HIFU Clinical
Trial I was very welcome to do so, but when I told him my preference was for active
surveillance he fully supported my decision. To quote from his letter to my GP:
"The histology taken on 29th July 2008 amounted to 81 prostate cores arising from
20 sites. There was no more than a tiny atypical focus of cancer amounting to
less than 1mm of disease. This is probably the lowest amount of disease that we
attribute". We agreed that I should have PSA tests every 6 months and meet up
again in March 2009.
2009
As it turned out, the appointment
in March was focussed more on the problems caused by my enlarged Prostate than
the cancer itself. The original TRUS biopsy (or maybe it was the MRI?) at my local
hospital had calculated my Prostate volume at 35ml (25ml apparently being considered
the norm) but the state-of-the-art equipment available in London seemed to indicate
it was more like 60ml - quite a difference. The way I looked at it, my Prostate
was certainly not going to get any smaller - indeed it would surely continue to
grow - unless I took some kind of preventative action.
Right at the outset
I'd been told by my GP that my raised PSA level was more likely to have been caused
by BPH (Benign Prostate Hyperplasia) than cancer, so I was already familiar with
surgical procedures such as TURP (Trans Urethral Resection of the Prostate) /
Greenlight laser, and drugs such as Flomax and Finasteride. In fact I'd already
tried a brief course of Flomax without seeing any noticeable benefit. The consultant
was willing to put me on a 6 month regime of Finasteride, which may well have
reduced the size of my Prostate, but already suffering from ED to a certain extent,
I didn't want to risk the side-effects making matters worse. He also mentioned
that the HIFU treatment could have the dual benefit of getting rid of the small
(known) area of cancer and at the same time reduce the size of the Prostate but
I decided that for the time being I would live with the discomfort. Finally he
gave me the result of my 6-month PSA reading, which had come down yet again to
4.3. Since I had decided against having treatment at this point, we agreed that
I should be transferred back to the consultant at my local hospital.
I
went to see him on October 21st to find out the result of my latest PSA blood
test - which was slightly raised at 4.6. He expressed the opinion that I should
now be arranging for another biopsy - which I told him I didn't want to do just
yet. Nor did I wish to sample the delights of TURP or Finasteride. He seemed a
bit put out by my attitude - I guess that most of his patients tend to follow
the advice they are given without question - and told me that if all I was planning
to do for the time being was have bi-annual PSA tests, then I might as well do
it through my GP. Fair enough I suppose, there doesn't seem much point in seeing
a specialist consultant unless you're prepared to do what they suggest. But it's
nothing personal and when the time comes, as sooner or later it most certainly
will, I will have no hesitation in setting up another appointment.
Life
goes on. My PCa journey started on November 6th 2007 when, knowing a hell of a
lot less than I do now, I briefly had to face up to the possibility that I might
only have a few years left to live. Next I had to deal with the idea that my future
might become restricted by impotence and incontinence. Two years later, I realise
that I've been incredibly lucky - or so it seems. But it's important to keep things
in their proper perspective: in 2000 I had a pre-cancerous polyp removed from
my colon and still need to have check-up colonoscopies every few years to ensure
there hasn't been a recurrence. At around the same time, it was discovered that
I have high blood pressure, so I've been taking medication ever since. My general
health is OK; I'm a few kilos overweight but certainly not obese; I have a desk
job so don't get as much exercise as I should, and I probably get through 3 or
4 bottles of red wine in a typical week. But I don't smoke, I eat a reasonably
well balanced diet and I play golf regularly. What I'm saying is that sometimes
you can focus too much on the devil you know, only to be ambushed out of the blue
by a stroke or a heart attack.
When I look through the case histories on
YANANOW I can recall several men who at diagnosis had very similar PSA readings
and Gleason grades to my own. Unlike me, they took the view, with the full backing
of their specialist consultant, that the best way to deal with cancer is to immediately
cut it out. Within weeks they had arranged for RP surgery. It's true that the
only accurate way to assess the level of disease within the Prostate is to carry
out a full biopsy after it's been removed, and sure enough in some cases it has
turned out that the cancer had been more widespread, or more aggressive than originally
thought. But, for the time being at least, that's a risk I'm prepared to take.
Good luck to you all.
Six's e-mail address is: ggleason69@googlemail.com
