Case Study Seven:
I
had an understanding of prostate cancer for some years prior to my own
experience. An elderly friend had asked me to get him any reading material I
could find on my trips abroad. In that way he could make an informed decision
when the time came for his own treatment. As he followed his medical journey it
allowed me to get an overview of the issues. It also ingrained in me the need
for regular PSA tests, which I diligently followed.
My career had been as an airline pilot, and from a
medical perspective that does have advantages. Every six months one is forced
to parade one’s health credentials in front of a medical examiner and convince
them that you are fit to go for another six months without dropping dead at the
wheel. Such pro-active medical screening is fairly unique in the New Zealand
middle aged male dynamic. Journeys to the doctor are shunned by most males,
until such time as they are confronted with an obvious malady that can neither
be concealed nor left ignored. It is for this very reason that there is quite a
high rate of early detection of prostate cancer in pilots - either by PSA blood
monitoring or the dreaded DRE - digital rectal scoping exam. My doctor
submitted me annually to the rectal finger job, a process neither of us
enjoyed, and would proudly proclaim at the conclusion of the satisfying
procedure that it was ‘normal and smooth’. Subsequent events indicate
that Bill’s finger needed a little bit of calibration.
The repair of a leaky home and an acrimonious marriage
breakdown meant that I took my eye off the ball for a couple of years with the
PSA checks. I received a little surprise in my package of tests for my licence
renewal in July 2012. (I was 70 at the time). What had been a normal PSA of 6
had grown to 12 and I was sent immediately to urologist Chris Hawke to see what
he could make of it. I might add that I had no other symptoms. Consultation in
the morning was followed by a biopsy in the afternoon. That involved taking
needle cores of the prostate under local anesthetic from the easiest access
point - the rectum. My advice is if given the choice between the biopsy and a
visit to the cinema – take the movies every time. I was somewhat distracted on
the drive home, both with the pain in my nether regions and the likely
prognosis. However, it is the most reliable and least intrusive way to gauge
what is really going on. A week later the resulting Gleason score of 4 + 4
meant that I had prostate cancer, confined to the left-hand side of the gland.
Something had to be done, and soon.
A full body scintigram X-ray – where they inject into
your blood radioactive material, send you away for a couple of hours then scan
X-ray your whole body. It is designed to determine that prostate cancer cells
have not progressed to other areas of your body. All clear on that one. At
short notice we opted for conventional radical prostatic surgery - although the
‘techno’ bent in me would have liked the Da Vinci robotic option. That four-and-a-half-hour
surgery was performed at Ascot Hospital on 6 August 2012 and my PSA had risen
to 19 pre-surgery. Three days later I packed my bags and catheter collection
and went off home to recuperate. My progress was ahead of where I, or the
medical staff, had probably expected me to be. What could go wrong?
Sunday – 26th August 2012 I had a really
good day in the garden. I was doing more than I thought I would be, and my only
performance shortfall seemed to be in the management of my plumbing. I was now
back to my own internal control systems and like a two-year old, some parts of
me still had a mind of their own. I seemed to be getting the hang of it and
starting my ‘pelvic floor’ exercises. All was great. After a glass of wine with
a good friend I suddenly felt weary – flu like – and drifted off to bed at 6:30
pm, an unusually early time for me. The next day the flu continued, and I
didn’t surface. The following day, same again …. Something wasn’t right and we
started talking to Chris Hawke and my lovely family Doc. He quickly arranged
some blood tests in some pretty curious looking bottles. Buoyed by being called
with negative results later that day, the following day unraveled with a call
from my Doctor to get up there pretty quickly as I was off to Middlemore
Hospital. One of the later blood tests revealed I had developed a streptococcus
algalactiae blood infection, either from the operation or biopsy procedure and
would need intravenous anti-biotics to kill this thing off before it got to me.
Six days later, 5 kg lighter and with some lower back and thigh pain I emerged
from Middlemore a stronger and more enlightened person, vowing to return with
my own chef next time. Bladder control had become secondary to surviving the
elements.
To aid in my recuperation, a trip to Thailand had been
planned and booked. Six days before departure I was back to Chris to get a
clearance to travel. A man of caution, he arranged an MRI to just check that
all was normal in the prostate area. We were still not sure what had caused the
blood poisoning. MRI completed a few hours later, I was stunned to get a call
later in the evening from Chris to get my bag packed and go to Auckland
Hospital. They had discovered two ‘collections’ in my abdomen, but in looking
further found a blood clot in my right femoral vein. This had clearly arrived
when I was confined to bed at home and couldn’t get up - not a good thing for
an ageing post-operative patient. I was happy to take a right turn out of our
front door to Auckland Hospital, rather than left for Middlemore. That night we
started intravenous blood thinners to control the clot, and then had to make
the decision how we could balance that process with the planned operation to
remove the collections. It all happened
though, and a neat procedure of inserting drains saw the collections go, my
blood thinning resumed and continued for several weeks. A week after admission
I was back home – alone, having missed my trip to Thailand and figuring out how
to give myself Clexane blood thinning injections. A mind over matter thing, I
convinced myself not to be a bloody coward. After all, young kids suffering
diabetes do it every day, so it couldn’t be too hard for an old bloke. I
managed it after several hours of procrastination, a glass of wine and some
dummy runs.
All was good with the World again. The blood clot
remained and saw the end to my flying career. I even started a new job at 70,
until … you guessed it. My PSA started a slow inexorable rise again, albeit
small, in mid 2013. Off to Chris and oncologist ‘Benji’ Benjamin. Another PET
scan revealed some cancer cells remained in the prostate bed. This time
radiology was confirmed as the appropriate treatment for the localised cancer.
I continued to work at my new job through the thirty-two days of radiology at
Mercy Radiology. I had no side effects at all but continued to marvel at the
compassion and patience shown by the staff. In order to accurately focus the
radiation beam on the affected internal area, they locate the equipment using tiny
alignment tattoos placed earlier on my abdomen. For consistency of treatment
your body must also be in a state of harmony – bladder more than half full,
bowels relatively empty and no impending flatulence. Try getting that all
together at once as they are all interrelated – and I wasn’t successful on all
occasions. It was then off to the bathroom to rectify the issue, followed by
drinking heaps of water to top up the bladder and have another go.
All went well following the radiotherapy until mid
2015 with a low stable PSA. Then it started to slowly rise again. This time it
was off to the Peter MacCallum Cancer Centre in Melbourne for a gallium PSMA
PET scan. These were not available in New Zealand at the time but are now and
funded by medical insurance. After some Trans-Tasman consultation, my
oncologist Maria Pearse and her contemporaries in Sydney decided that a further
round of radiation was not recommended, due to the proximity from the
previously treated area (1.8 mm - i.e. we only just missed it), Surgery was not
an option for me as I was pretty gun shy to go under the knife again.
We thus started a series of Zoladex hormone treatment
injections which lower male testosterone levels. Administered into the abdomen,
it inserts a small capsule about the size of a grain of rice by means of a
‘blunderbuss’ syringe. It dissolves over a period of three months and is a
palliative treatment only. It does not cure cancer. It does significantly slow
it up, however. It has its side effects – weight gain, hot flushes, man boobs,
lack of sex drive and some weariness.
I have continued hormone therapy on and off for the
last five years and have a good quality of life with a prognosis of a few more
good years which I can live with. I have the odd slip up with urinary issues if
I hold on too long, but don’t resort to pads. I do choose the colour of my
trousers well. My erectile function is zero post-operative, but I am alive
and well.
For those who are navigating prostate cancer -
·
Understand the Gleason
Score. Whilst a little complex, it is what determines what
course of action your surgeon is likely to follow.
·
Be a patient patient. Once diagnosed we all are in a rush to get this thing treated so we can
move on with our lives. We just want to engage in battle with the enemy. Some
things will not happen at the pace you desire. In expressing my frustration to
oncologist Benji at the pace of things, he advised that I was the lucky one.
Most of his brain tumour patients are dead within months of the first
consultation. Prostate cancer is generally a slow progressing illness.
·
Management. I am diligent and pro-active with my monitoring of the disease. I
initiate my own PSA checks and manage the resulting numbers. I do not rely on
the medical fraternity to notify me when they are due nor analyse the results.
I keep a copy of all tests personally. The rate of change of PSA growth is
critical, not the finite number. One practitioner noted on my results he was
pleased with the number – I wasn’t, as he had forgotten I had already had a
radical prostatectomy and the number should technically be zero – not a number
above that. Telling you they will call if it is an unusual test is a flawed
process. They forget – and you will never know. The medical fraternity still
has a long journey to fully embrace safety management systems. Assume nothing -
follow up everything.
·
Doubling Rates. Early on in the piece I learnt about cancer doubling rates and I have
found it particularly accurate. In essence, the time it takes for the cancer
cells to double is around about the time it will take to double again. It’s
the doubling rate that kills you! PSA is a good measure of severity of
prostate cancer and I could accurately predict forthcoming PSA results -
providing no medical treatment was under way.
·
Optimism. If you want to see the most optimistic people in the World, go to any
cancer treatment waiting room. They all have the same issues as you, everyone
talks freely about their journey and they are all doing something positive
about this wicked disease. I even found that trait in a young man in his
thirties who had a PSA in the 800 range and was in palliative radiation
treatment. He was a true inspiration.
·
Be informed. There is plenty of material out there and if you can’t find it ask
someone with prostate cancer as you get into understanding this disease pretty
quickly after you get diagnosed. I used a publication ‘Dr Patrick Walsh’s Guide
to Surviving Prostate Cancer’ as my bible and it is available from Amazon. It
is comprehensive and the advantage is the chapters are arranged in the order
your cancer treatment progresses. If you are at a particular point of the
journey, you can pick up that step from the book without immersing yourself in
all the background material.
·
Take control of your
treatment. Go with a list of questions to your medical
practitioner and get the answers. Take someone with you to write the answers
down. You will be too emotionally involved to take it all on board at once, and
a removed person will think of things you may not have thought of. My wife has
been with me to all of my consultations and will not let me get away with just
patsy questions.
·
Encourage. Most males are hesitant or naïve about prostate cancer. I encourage all
young men to start PSA checks at 40, then five yearly intervals until fifty,
then two yearly until sixty, then annually from then on. Associate it with an
event (birthday). I highlight that it is the change in number that is
important, rather than the level itself. Do keep your own records.
·
Bladder: I had trouble with bladder management initially, until I started pelvic
floor exercises. I don’t believe I was told about them in hospital, but they
work. Ask your wife - they are experts after childbirth. There are plenty of
lessons on how to do them on You Tube.
Go well on your journey.
