JB
W and Jacqui live in Trinidad, West Indies. He was 44 when he was diagnosed on
30 August 2004. His PSA was 29 but he was not assigned a Gleason Score. Here is
his story:
In 2001 I had a routine blood test for lipid profile and, though I was only 42,
my doctor decided to include PSA. This came back as slightly elevated (6.1), so
I was referred to a urologist for a biopsy (I prefer to call it a "biospy") with
6 cores. This proved negative.
One year later my PSA had risen to 7.5,
so I had another biospy that once again proved negative.
In April of
this year my PSA had risen to 21.0, so yet another biospy was administered--this
time with 10 cores. I was beginning to wonder how much of a prostate I had left!
One of these showed 'weak suspicious cell activity.'
At this point my
urologist decided to get to the bottom of it all (pun intended) and do a saturation
biospy. A total of 23 cores were taken under general anaesthetic. Two of these
came back positive, though in a most unusual way: I have a form of cancer that
is rare, being in my papilliary ducts.
Currently I am awaiting a CT
scan to stage it, though my doctor is fully confident that it has not yet spread
beyond the prostate (they don't just say such things, so they?) After that, he
is recommending 2 years of hormone therapy followed by brachyterapy. I cannot
work out why he cannot do high density brachytherapy at this time, but feel I
have to go with his judgement. (He is not a one-man-band, but is consulting with
specialists in Chicago regarding protocols.)
The biggest challenge right
now is for my wife, who has been in denial for the past two years. She is having
to do a sudden re-think, especially having read of all manner of complications
for every type of treatment (impotence and incontinence are her biggest worries).
I, however, am not comfortable with watchful waiting as an option: after all,
the past two years have been merely enforced watchful waiting, and my PSA has
risen exponentially.
So, I await developments. . .
The
news is that there is no apparent metastasis-wonderful news, as far as I am concerned.
The treatment will be three months of hormone therapy to stop the growth (started
that this morning) followed by brachytherapy, which will be at about Christmas.
If
a few days discomfort then gives me a longer, pain-free life, it will be a wecome
Christmas present.
I
promised some time ago that I would give an update on my progress, so here goes
. . . . .
I
had originally thought I would be receiving hormone-blocking treatment for two
years, then brachytherapy. This was a misunderstanding on my part. Instead, I
received brachytherapy on October 31st 2004, but will continue with hormone blockers
for the next two years.
My
journey to brachytherapy began with a volume study on October 16th, which was
hell: this procedure was done without general anaesthetic, though the literature
I had been given told me that I would be knocked out. As it was, I did not take
well to the catheterisation. The doctor who catheterised me rammed the tube home
as though trying to clear a blocked drain, and the pain was exquisite. Having
installed the thing, he abandoned me for about twenty minutes while he took care
of other matters. Jacqui, my wife, saw my discomfort-the feeling that I needed
to urinate was overwhelming, and I could not keep still-and went to seek his help.
Rather than come and check on me, the doctor simply told her that a "mild" sensation
of needing to urinate was normal. Needless to say, we were not impressed, and
insisted that he have no further involvement with my treatment.
The
ultrasound was conducted by a lady so charming that I had all on to hide my embarrassment.
Despite my discomfort, I managed to quip, "Abandon all dignity, all ye who enter
here." She informed me that my prostate was small, a mere 16 cc ("Ah well," I
mused, "never mind the width, feel the quality"), and that this would at least
shorten the volume study. When she told me she was done, I asked her to ensure
that she had saved the results: there was no way I wanted to have to go through
this again. Then came the nasty job of removing the ^&*#@)(#& catheter, which
the doctor yanked out as though hauling a boat to shore. I was left with a burning
sensation that lasted a week (I told Jacqui, "It's like pissing red hot fish-hooks")
and gave me nightmares: after all, I had been told that I would need to be catheterised
for the brachytherapy itself. These fears persisted until I went to see my urologist,
who was to perform the procedure itself. He did much to reassure me, though it
was a major challenge for him.
The
seeding itself took place on Sunday October 31st, 2004, at 7.30 a.m. I was glad
to get it out of the way so early in the day, though this meant me getting up
at 4.30 a.m. to start preparations. I was very nervous, despite my urologist's
reassurances, but the staff was wonderful, and did all they could to settle me
down. The head nurse was especially a delight: she had trained in England (my
home country) at Harrogate, a town scarcely a stone's throw from where I grew
up, and we spent much of the preparation time reminiscing about my native Yorkshire.
Furthermore, the anaesthetist was a kindly gentleman in his mid fifties whose
bedside manner was all I could wish for.
Perhaps
I have spent too long in the Developing World, where I have grown accustomed to
frequent power cuts, an intermittent water supply, and roads with potholes so
big they can be seen from the Moon: but I was left speechless ("Gob-smacked,"
as we say in my native Yorkshire) by the professionalism of the staff, and by
the operating theatre itself, which gleamed with chrome, was absolutely spotless,
and crammed with all manner of monitors to tell the team such things as my heart
rate, blood pressure, breathing rate, shoe size and mother's maiden name.
In
all I was given 56 seeds, and the process took about an hour. I did not react
well to the general anaesthetic, and came round initially with the feeling that
I could not breathe-a result of a blocked nose. I lay on the operating table,
completely paralysed and feeling absolutely petrified as I struggled to draw breath,
and thinking what a shame it was that I had survived the procedure only to die
now. The sense of relief when I managed to open my mouth and suck in air was palpable.
Shortly
I was taken to the recovery room, where I developed an overwhelming feeling that
I needed to urinate. Indeed, it was with this news that I greeting Jacqui when
she was allowed in to see me. I was told in no uncertain terms that this is a
natural response to catheterisation, and that it would pass shortly: which eventually-not
shortly-it did. I seem to recall complaining to Jacqui at being treated so curtly,
and she telling me to do as I was told, that the staff knew what they were doing.
I also recall shivering wildly after the cold of the operating theatre. I could
imagine the newspaper headline: Man dies of hypothermia in the tropics. The shaking
did not subside until I was covered with four sheets and a blanket.
The
remainder of my recovery was uneventful. I was shortly taken to a ward-I was told,
"You have to go now, Dr Wilson: the party's over." "It's been fun," I replied-and
there I was given cold water to soothe my throat, which was sore from the anaesthetic.
(I have a rasping cough even now, two days later.) I was informed that I could
leave once I had shown I could pass urine, and so spent the next two hours waiting
for my bladder to fill. When at last I could pee, the feeling was delicious: no
pain whatsoever, and the streaming went on so long that I was worried that the
bottle might not be big enough. My pride when I showed Jacqui and the nurse my
600 cc of urine was laughable. I was discharged from the hospital at about 1.00
pm.
Currently
I have a bruise the colour of raw liver, and sitting for any length of time is
uncomfortable: and I need to urinate about every 2 ½ hours, day and night. Because
of this, and perhaps the anaesthetic also, I feel very tired. Otherwise, however,
I feel fine. Jacqui tells me I look as if the weight of the world has been lifted
from me. In many ways it has: my worries about the procedure and its effects proved
largely unfounded, and in my mind's eye I can see the cancerous cells capitulating
by the thousands. I know I am not in the clear yet, and that it may be years before
I can feel so: but at least I feel as though I am on the way to a long and healthy
life. .
I
received 56 brachytherapy implants (I-125) on October 31st 2004, at a time when,
following some Zoladex treatment, my PSA had fallen from 29 to ~4.9. This week
I had my first post-implant PSA test, which read 2.57. I have called this in to
my urologist, and am awaiting news as to what happens next.
The
reading seems a bit high for complacency, but, without trying to sound panicked,
I have to recall that mine was not the usual type of prostate cancer, being in
my papilliary ducts rather than elsewhere in the gland and its periphery. Its
location was the cause of the high PSA readings in the first place: it is unusual
to have a PSA so high without metastasis. It is, therefore, highly unlikely that
the wonderful stories of people whose PSA became undetectable after 3 months after
brachytherapy apply to me. (Indeed, my cancer is sufficiently rare that I am being
monitored with interest by groups worldwide. Not that that is much of a source
of comfort. . . . .)
I
know I still have 21 months of intermittent Zoladex treatment to go, and there
is life in the implants yet. I shall get in touch again when I have heard from
my urologist.
Early
last September (2005) I had a PSA test, only to find that, after a series of rises,
it had risen to 13.0 ng/ml. This coming at the end of a series of rises, my urologist
told me that I have "continuing cellular activity," which I guess means the brachytherapy
was not a success--that my cancer is not in remission. However, a CT scan taken
last September indicates that (Thank God) there is still no spread beyond the
prostate.
My
urologist followed his ponouncement with 3 months of Androcur treatment, which
brought my PSA down to 3.30 ng/ml by November.
Currently
I am in a three-month period without drugs, and am due for my next PSA in mid
March. I guess at that point we shall have to decide how to proceed. Thankfully
my urologist tells me that we haven't yet exhausted our options, though I have
no idea what those are.
Hi
and Greetings from the Caribbean. I thought I should being you up to date on my
tusslings with PCa, given that you already have my profile on record.
We
(Jacqui and I) visited my urologist together about 5 weeks ago, at which time
my PSA had risen to 16.3 ng/ml from ~3.5 ng/ml in January. He told us that there
was obviously some cellular activity which had been beyond the reach of the brachytherapy,
and that we now have to concentrate on that. The rate at which my PSA rises is
most disconcerting, though I am assured that is not necessarily a measure of how
big the tumour is. He wanted to put me on hormone ablation tablets for a year
(we use Androcur here). We asked if we could look into radiation instead. He agreed,
and sent my details overseas (to a hospital not a stone's throw from where I grew
up in Yorkshire. 'Tis a strange, small world, isn't it?)
Yorkshire
wrote back to say that they would not want me to have more radiation after the
brachytherapy: that the risks of side effects are too great. I have to go along
with their opinion: unlike the American hospitals, the British NHS is not driven
by rabid profit motives, and are more likely to consider the quality of life for
me, the patient.
So,
for the moment I am back on the Androcur, and hoping my PCa is not yet hormone
independent. My latest PSA, taken about two weeks ago, recorded a fall to 8.1
ng/ml, which suggests it is still responding positively to the drugs.
Let's
hope it stays that way a good, long while. Meanwhile, I am doing what I can with
my diet, though this may be a feeble weapon against PCa. Recently I saw an article
saying that hot peppers might have some effect on hormone indepent cells, so I
have added a scotch bonnet pepper to my food intake each day. It feels good to
be doing something that might be positive: and I have acquired a taste for peppers.
Mind you, if somebody told me that deep fried bats' doo-doo with custard would
help, I'd be chowing down on that too.
I
am told it could take years for this to work, so I am now in this for the long
haul. Meanwhile, I feel good: no problems peeing, no back-ache, no apparent spread
to the lymph nodes and seminal vesicles. So . . . .
I
have never been very good at waiting for my PSA test and biopsy results. You would
think that, after so many tests, I would have grown accustomed to the wait. If
anything, the opposite is the case. I have an impatient, anxious streak that wants
to know where I stand as soon as possible after the blood or flesh is taken. And
the more tests I have, the less patient I become. But, of course, I have no choice
but to wait. I cope with this using what psychologists would call displacement
behaviour; but there is no way I or anybody else can predict on what I will fixate
while waiting.
Maybe a few examples will illustrate. The first time I
had a biopsy, and had to wait three weeks for the results, Jacqui and I travelled
on the spur of the moment to Ecuador for a holiday. We just wanted to get away
from home for a while and distract ourselves with novelties. It was a disaster.
We were surrounded by the most amazing scenery and wildlife-we visited the upper
Amazon and the Galapagos Islands, among other places-but all I could think about
was the damned biopsy and the looming results. Somehow, I knew-I already knew-that
I had cancer. Jacqui, on the other hand, was insistent that there was no way I
could second-guess that results. I was, after all, of the wrong age and wrong
racial type for early PCa, and had no family history of the disease. She insists
that I still owe her for that holiday, although I have no idea what I can do to
make amends. I cannot think of anything big enough, loving enough. I also owe
her for a birthday somewhere along the way too-I think that was for my third biospy.
With
my PSA tests, which are currently being conducted very three months, I have to
wait about a week for the results. My anxiety, however, commences about a week
before the blood is even taken. So, over two weeks I displace, and sometimes in
very screwy ways. Over the years, during those weeks of awaiting results, I have,
for example:
a)
written and published an autobiography, although it is about the seven years I
lived and worked on the tiny Caribbean island of Nevis, and makes no mention of
my looming cancer
b)
composed some music, some of which has been performed. This includes a jolly little
piece for viola and piano called "Requiem for a Cancer Cell" (you will gather
that I have a bit of a creative streak)
c)
spent a fortune on eBay on a stamp collection
d)
buried myself in my research work to the exclusion of all else (I am a geologist
who lectures at the University of the West Indies and gets to play at palaeontology).
All
of these have been hell for Jacqui. She has stood by me through thick and thin,
but these weeks of waiting are very thin indeed. She feels pushed out by my brooding
silences, by my preoccupation with trying to second-guess what the results might
be, and by my fixations. I do my best to make up for it in the months between
tests, but whatever I do then cannot help but be inadequate.
This last
time, however, was the screwiest and toughest of them all so far. I have been
on hormone ablation tablets (Androcur) for almost a year now, and have grown concerned
that the day will come when my PCa becomes hormone independent. The test was done
on a Wednesday, my doctor received the results on the following Monday, and, when
I called to learn his reaction, his secretary told me he had left for the day
and not left her with any reaction to pass on. She could not even give me the
PSA reading. In short, I would have to wait until the following Friday (today)
for his next surgery to learn my results. That meant three whole days of waiting
to learn if my PCa was still behaving. Three whole days! Having become so adrenalin
ridden and primed for news, no matter whether good or bad, on the Monday, my reaction
went off the scale.
Looking through my shelf of books at work for a particular
one I needed, I chanced upon a book that my first real girlfriend gave me. In
the front was a simple inscription-a quote from Winnie-the-Pooh, the words "Happy
21st Birthday Brent," and her name, all written in her swirling, girlish handwriting.
She gave me that book 26 years ago. Inside was a photograph of the two of us taken
the day we graduated from university. I became fixated on wanting to know what
had happened to her. I wanted to know where she lived, if she had married and
had kids, how her career had developed. I fixated on her to displace my anxiety.
I looked her up via the internet (that wasn't too hard: the British electoral
roll is published online) and dashed off a letter.
What a crazy, absurd,
idiotic, selfish thing to do. I am married. I have a beautiful wife. I have a
wife who is so supportive and loving that she is the envy of many around me. She
is the best person ever to have entered my life. (For those who want to know what
she looks like, there is a poor quality photograph online at some blog
or other she did) My marriage of 13 years has been far, far happier than those
of many of my acquaintances. So, why this latest fixation? Why displace in this
way, on an ex from nearly three decades ago? Jacqui asked mournfully, "Why can't
you displace on me instead?"
The truth is, I haven't a clue. Maybe it
was simple curiosity-though this I doubt. Maybe I wanted to show off how far I
have gone in life. Maybe it was a hankering after those simpler, gentler days
when I had no such enemy as this PCa inside me. Maybe I wanted to apologise for
the way that my first girlfriend and I split up-which we did because I was a selfish
individual who took to little note of her needs. Maybe I became fixated on a wish
to apologise for my behaviour then, so that I could move forward with a least
one less burden on my mind. The truth is, I haven't a clue. All I know is what
fixation I developed this time, and what hurt it caused Jacqui.
I remember
vaguely a quote from Oppenheimer, from the day the Americans were testing their
first atomic bomb at Trinity (which, I think, is in Nevada). He said, "God, these
affairs are heavy on the heart." Having unsuccessfully irradiated PCa feels like
having my very own atom bomb. The difference is, I don't know when, or even if,
it is going to explode or how rapid that explosion might be. And the waiting for
results from tests is far from a walk in the park. The whole affair is heavy on
not only my heart, but also on those of my wife and the others close to me. All
I can say in self defence is that, one of the first things it says on the leaflet
that comes with the Androcur tablets is that-in my words, not theirs-mentally
they will send me screwy. It does not, however, talk of the knock-on effect that
this has on others!
And the result I received today? My PSA has fallen
to 0.54 from 1.13 at the end of last November.
And the outcome? Fifty
more days of Androcur.
Cordially
Brent
Brent
says in an e-mail that his PSA was marginally up at 0.54 ng/ml but his doctor
is not too concerned.
Greetings
from Trinidad. I hope this update finds you as healthy as I am.
A
few days ago a student of mine looked me up on the internet. (She is one of the
very few ever to do so. Are students not inquisitive nowadays? Or do they merely
accept their university lecturers as a matter of course — just part of the educational
system that will give them their degree? And were we really ever any different?)
In addition to finding seemingly endless trivia about my academic career – very
little of it posted by me, I might add – she came across my jottings for Yananow.
Evidently feeling she should say something, but also unsure what she should say,
she told me that my Yananow writings are . . . interesting. What could I say?
How much does a 19 year old know about such things as hormone deprivation, unwelcome
boobs or brachytherapy? — unless, that is, they have prostate cancer in their
family. She then asked me, “But what happened next?” That’s a fair enough question,
so here I am, writing the answer I should have sent to you some time ago.
After 18 months of Androcur tablets, my PSA was driven down to 0.12. The
doctor treating me tells me that this augers well for long term control, so Jacqui
and I are naturally delighted. Right now, guided by our doctor, we are trying
a few cycles of one-month-on-the-tablets, one-month-off, to see how things proceed.
If this goes well, we shall switch to 3 month cycles of intermittent treatment,
and hope that the cancer remains hormone dependent for a long, long time. I came
off the drugs on November 13th 2007 (a slightly belated birthday present of sorts?),
so am due to go back on them on December 13th.
After 18 months
of hiding behind the tablets, and maybe even daring to hope that they just might
knobble the dread beast altogether, I suddenly feel more than a little vulnerable.
I am taking all the supplements I know of that can slow the growth of prostate
cancer (capsaicin, curcumin, soy and selenium-laden Brazil nuts, to name a few),
and sometimes my entire diet feels to be geared towards keeping the beast in check.
For example, I was warned by my doctor not to eat red meat. I guess they say that
to all patients, no matter what the medical complaint. However, I took the attitude
that he must know more than me about my condition (no snide remarks about my doctor,
please; I think he’s doing a wonderful job, and have even named a species of foraminifera,
a microscopic monster called Textularia sawhi, in his honour). So, I stopped eating
red meat except when on holiday – that is, just a few times a year. Oh, how I
sometimes long for a nice, juicy steak (medium rare, please, with a baked potato
and a green salad). Oh, how I sometimes wish we went away on holiday more often.
There are other aspects to coming off the Androcur that are disquieting.
Dare I write about these? Will students reading this find it amusing? Or – and
perhaps more disconcerting — will the information I post here ever be held against
me should I ever apply for a position elsewhere? Something tells me that I should
tell all, because I am actually writing for those unlucky men who have joined
us in the prostate cancer club, and who need all the honest information they can
get. So, here goes . . .
The Androcur tablets, as you know, depress
one’s libido. They didn’t kill it altogether on my part (although the injection
of Zoladex years ago did that for a while); they merely slowed things down a little.
But coming off the Androcur, I suddenly find myself with an increased libido and
a very (pleasantly?) surprised wife! Some time ago a Yananow reader wrote and
told me how lucky I was to have such an understanding partner. I am pleased to
say that she continues to be understanding, if a little long-suffering and bemused.
Meanwhile, we are making as much hay as we can while the sun shines. True, sex
isn’t what it used to be—nowadays it’s like a black-and-white film, whereas it
used to be in full, glorious Technicolor. However, our making hay also stops me
from staring (too hard) at the pretty young things on the campus where I teach.
As for the student who asked what happened next, I am grateful that she
asked. During my time as a schoolchild, I used to think that teachers weren’t
normal people. They didn’t have lives outside of school. I don’t know what I thought
they did during school holidays, but I have some vague memory that, while at primary
school, I thought the school building had a special room in which the teachers
lived while the schoolboy me was on vacation. At university my attitude changed
a little, but that was because I thought my lecturers between them knew everything
– absolutely everything. All I had to do was ask a question, and they would give
me an answer . . . of sorts. Maybe sometimes they were making the answer up as
they spoke; but their answers always seemed so reasoned, so measured. Once again,
they weren’t proper humans. So in this case, I am glad the student read my site
and asked her question. I hope that her doing so has made me – one of her lecturers
(and one who always tries to give reasoned, measured answers) – not only a proper
human, but also a human with his own vulnerabilities and flaws.
Best
wishes for Christmas
Brent
I
guess it's time for another update regarding my PCa, so hear goes--yet more stream
of consciousness writing.
Weight gain and gynecomastia: two of the side
effects of prolonged use of Androcur. When I searched for “Androcur weight gain”
using Google, the first sites I encountered were from women with excess testosterone
associated with polycystic ovarian syndrome. They were delighted at their loss
of excess body hair and increase in boob size. Each to his or her own, I guess.
I cannot say I am overjoyed at these myself (except, perhaps, for the way Androcur
has maintained my lush head of hair).
After 20 or so months on continual
Androcur, my PSA had fallen to 0.12, so my doctor (perhaps encouraged by Jacqui)
decided to switch to one-month-on/one-month-off for a year. It was, as he put
it, to see how things went. If they went well, then we would then switch to three-months-on/three-months-off.
After nearly eight months of this, I cannot say they are going well.
After
six months my PSA had risen to 0.56—a small enough number but, according to my
high school maths, that’s a rise of 360%. Shaken by the rapid and continual rises,
Jacqui and I scurried along to see my doctor, who told us to continue as we are,
and that he would “expect to see some variation”. I get the impression that he
will continue with Androcur alone as long as possible, this having the smallest
number of side effects. For me, the main ones have been breathlessness, irritability,
weight gain and gynecomastia, all of which serve daily to remind me of my cancerous
condition. When Jacqui called my doctor to ask if anything could be done to alleviate
the gynecomastia at least (I find it very embarrassing, and nowadays wear the
baggiest clothes I can find), she was told that it was a minor inconvenience well
worth putting up with given the alternative—that is, a horribly painful death
from cancer. The instruction leaflet that comes with the tablets states that they
should be administered “if possible with the simultaneous use of psychotherapeutic
measures”. I guess that, Trinidad being in the Third World, my doctor’s words
are the nearest I shall get to psychotherapeutic counselling.
Weight gain
is also a major concern, especially with Androcur being a steroidal drug. Don’t
get the impression that I am obese. At 6’ 2”, I weigh 182 lbs, which is (I am
assured) a perfectly healthy weight. But before all this started, I weighed only
168 lbs. The biggest gain, about ten pounds, came near the beginning, when I was
injected with Zoladex to decrease the size of my prostate (as I it needed it!)
Since then my weight has drifted up a little, but the slow rate has come at a
considerable cost. Thankfully, I am gluten intolerant, sand o eat nothing made
with wheat, barley or rye: No bread, no pasta, no biscuits (cookies, to our North
American chums). Potatoes are a thing of the past, as are the bananas and mangoes
that grow profusely in our garden. Coffee is nowadays unsweetened (I guess I will
eventually grow used to that, but it’s taking a long time), and sweet drinks are
a distant memory. All forms of alcohol and no more. Rice, which is the stapel
for many here, is a rare treat—a small portion perhaps once a week. No wonder
I am tired all the time; I no longer eat the carbohydrates that give others their
energy.
As you know, I grew up in England. Although I like living in
the Caribbean, where I can very directly see my labours contributing to the region’s
development, I miss the seasons with which I grew up. So, Jacqui and I in March
took a five day trip to New York State. It was lovely. The trees were just coming
into leaf, the daffodils and tulips blooming. The days were warm, but the nights
chilly enough to warrant a romantic, open fire in our hotel room. Being in such
idyllic circumstances, I let my diet go and ate a few meals of North American
ingredients and portions. The mutton chop that could have served three was delicious,
as were the oysters and the sushi. I also ate a steak, but, being ever mindful
of my doctor’s injunctions regarding read meat, limited myself to the 8 oz size.
I was most dismayed on returning home to discover that I had put on four
pounds in those five days. How can one do that? A pound of fat contains 3,500
calories. Surely I hadn’t gorged myself so much that I had eaten an excess 3,500
calories each day? Some if it, I must admit, may have been water retention. But,
despite my draconian diet since, it has taken me three months to get rid of that
weight. The online sites I have found on this matter have been little help, merely
saying that weight gain is a side effect of many prostate cancer treatments, and
that many men (I guess that’s me) have considerable trouble losing that weight.
So I plod on, permanently eating a diet somewhere close to South Beach
Phase 1 while trying to feel grateful that I have so far been spared any of the
more painful symptoms associated with PCa. But I can’t help but feel dismayed
at the way my life has changed, and will change again once the cancer becomes
resistant to the Androcur. And I can’t help but feel disappointed for Jacqui.
When she fourteen years ago promised to love me “in sickness and in health”, we
had hoped for more health than sickness. We saw ourselves in a dream home in our
retirement (still nearly a decade and a half away), sipping cool drinks as we
watched the sun set from our rocking chairs and planned our next holiday. Nowadays
I wonder, though I dare not voice the thought to Jacqui, if such a retirement
is even going to happen for me. Certainly prostate cancer at such an early age
was not on our agenda.
And meanwhile the weight gain and gynecomastia persist
as physical manifestations, daily reminders, that all is not well.
Later:
I
got my latest PSA result on Friday 18th July, 2008, taken at the end of yet another
two-month cycle of intermittent treatment with Androcur. On this occasion it had
risen to 0.91 (which I calculate to be a rise of 62.5% over the two months). Though
dispiriting for me, this was not unexpected.
The hassle this time came
in that my Doctor has a new secretary who has yet to learn the knack of delivering
messages. (Have I ever mentioned that I named a species of shelled amoeba after
my doctor?) I'll leave it to you to decipher
which species is his, and which one I named after my wife.) When Jacqui called
the doctor's office on Monday July 21st to find out his decision, she learned
that he had indeed left a message, but that his new secretary could only decipher
the word "monitoring" within it. Jacqui asked that the doctor himself get in touch
personally to tell of his decision, only to learn that he would not be able to
do so until Friday July 25th. It was a short enough time to wait, but on this
occasion the thought of waiting threw Jacqui-rather than me-into a tail spin.
After talking with the secretary, Jacqui for some reason went trawling
on the internet for information about Androcur, apparently trying to second guess
what the good doctor's decision might be. (I much prefer to say one trawls rather
than surfs the internet. After all, one can turn up such wonderful by-catch.)
Later that evening she, out of the blue, gave me a tremendously tender hug. (Don't
get me wrong; she hugs me frequently; but on this occasion there was something
especially tender about the way she did it. I am at a loss to describe that hug.
Let's just say there was a whole woman's worth of love in it.)
"Is
something wrong?"
"I guess I've just realised something."
"Ho-kay?"
"They're
not going to be able to cure you, are they?"
I took a deep breath. "Apparently
not. All they can do is control it."
"Oh well, at least I managed four
years' of denial."
The conversation that followed ranged widely. We
talked about the new treatments that are coming along (I remember saying, "They're
developing new drugs as we speak"), and Jacqui showed me an online BBC article
about the new drug abiraterone, which shows promise for men with advanced PCa.
We reminded ourselves that mine is an unusual form of PCa, and told ourselves
that the tumor must be tiny-look at all the trouble the medical professionals
had finding it in the first place. We talked of the side effects of the drugs
that will come next, once the Androcur loses its efficacy, and bemoaned the coming
loss of quality of life for both of us. We mulled over my diet-Jacqui taking the
matter seriously for the first time-and explored how I can get a full range of
nutrients without piling on weight. And we talked this time of what is my main
concern right now-the effects the drugs are having on my short term memory. We
agreed that I must push ahead with my academic research, if only to try and keep
my brain somewhere near being in top gear (although it feels to be permanently
in second gear nowadays). And finally we agreed that we must make a concerted
effort to pack all the fun and experience we can into life.
We finally
spoke with my doctor, who is concerned about the rate of rise in my PSA, and is
to consult with his oncologist colleagues and get back to us. Meanwhile, however,
we are to continue as we are, with me currently off the drugs for a month, and
two weeks to go before I start them again. Oh what an emotional rollercoaster
of a life!
So, on that note, I must away. There's a whole day's worth
of fun and experience to be had out there, and it's time I got on with enjoying
and experiencing it.
On
my birthday November I had a PSA test that came back as being at 1.99, up from
1.51 two months earlier. It didn't seem too bad, but my doctor thought otherwise.
Early in the Summer, Trinidad opened its very own oncology unit, staffed in part
by a radiation oncologist who visits for one week each month from Canada. We were
referred to him for a consultation, and things rapidly went form bad to worse--mentally,
at least.
He
told me that I needed to be considering adjunct treatment, but ruled out further
radiation, saying there was too much of a chance of developing a fistula (a hole
connecting the bladder and rectum). He outlined several alternatives, such as
ultrasound and cryotherapy--neither of which can be done on Trinidad--but then
talked at great length about the possible horrendous side effects from each (including,
of course, fistulae). Given that I have had radiation already, he thought the
side effect probable rather than possible, and made it obvious that these include
incontinence and impotence.
What
was most dispiriting was his unwillingness to recommend one treatment over another,
he leaving the choice to me. I felt furious (although, in that typically British
way, I said nothing). I am neither a medical doctor nor an oncologist. Had I wanted
to be, I would have led my education in that direction. I expect doctors to tell
me what they are going to do to fix me, not leave me to choose. Are they afraid
that, should things go wrong, I will sue for malpractice? If I choose and things
go wrong, are they leaving themselves in the heartless position of being able
to say, "I told you so"?
He
told me I had maybe six months to make a decision, then afterwards gave me such
a thorough examination that it made my eyes water. There was genuine surprise
in his voice when he said, "But everything feels normal." The discussion ended
at that point.
I wrote to my own doctor requesting a prescription for my next PSA test, and outlined
what had occurred. He in turn telephoned me to support the second opinion, saying
that I have six months to decide.
Jacqui
and I are left feeling furious. I have no symptoms other than an errant PSA. A
DRE revealed nothing. I am only 49, can pee without any problems, have no backache,
and have a wonderful sex life (as far as is possible after brachytherapy). Both
doctors are willing to jeopardise this in search of an immediate cure, with the
distinct possibility of wrecking me overnight.
We
contacted various online sites for advice, and the message coming back from people
in a similar situation is, don't do it. Not yet. The gentler methods of control
have not yet been exhausted. We concur.
We
have decided that we shall wait until my next PSA test in January, when we shall
visit my doctor to express our dismay and ask, bluntly, Is this the best you have
to offer?
Are he and the radiation oncologist merely playing with their latest medical toys,
with me as a guinea pig? God knows, I hope not. What happened to the Hippocratic
oath and "First do no harm"?
Meanwhile,
our lives go on as we struggle to keep the panic attacks to a minimum .
JBW's e-mail address is: bwilson@eng.uwi.tt
