Barry
and Jean Curtis live in Victoria, Australia. Barry was 61 when he was diagnosed
in March 2004.
His initial PSA was 9 ng/ml, his Gleason Score was 3+3= 6 and his staging was
T1c. His choice of treatment was surgery. Here is his story:
My prostate
history started in 1998 with a PSA of 4+. I was concerned about frequency of urination
and alerted to the wisdom of prostate testing by a newspaper article. We took
no action. Subsequent testing through to 2002 saw the PSA rise to 7+ but after
DREs by the local doctor and a urologist we decided to take no further action.
In January 2004 I thought it might be time to have another look. The PSA
had hit 9+ and the alarm bells started ringing. Despite another inconclusive DRE,
didn't find DREs painful just uncomfortable and mildly embarrassing, but that
soon passed, a biopsy was the next step.
In a process that took about
half an hour I had an ultrasound probe and pair of scissors inserted into my rectum.
Again I didn't find this painful at all, merely uncomfortable. Perhaps my description
of the equipment is a little misleading. However ultra sound pictures were being
looked at and some snipping of 6 tissue samples took place. The result, delivered
on a fateful 1 March 2004, was 10% cancer in one sample and 40% in another from
the left side of the prostate.
My comment as we I walked from the appointment:
'Well if I'm going to have cancer I guess this one is a good one to get', wasn't
appreciated by my wife Jean.
We researched treatment options thoroughly
and read extensively about the experiences of fellow travellers. [YANA was invaluable.]
We decided Brachytherapy might be the best option. It appeared to have a high
success rate and the side-effects appeared less extreme than other choices. However
after a cystoscopy (another camera, this time inserted through your penis, again,
not painful) indicated that my urethra was too restricted to proceed. (Apparently
this form of treatment can enlarge the prostate and if your prostate is already
impeding urine flow this treatment extenuates the blockage.)
We then
decided on surgery. I use 'we' here because my wife has provided invaluable support
throughout. Surgery appealed mainly because it offered the chance of a once-only
treatment that would leave me free of cancer and able to continue life as before.
Okay, there would be possible incontinence and loss of erections to deal with
but the radiotherapy option seemed to have similar side-effects and some possible
bowel damage thrown in. Watching and waiting didn't appeal at all although we
did flirt with the possibility of trying extreme diets to see if we could arrest
the cancer but in the end something was telling me 'get it out!' Furthermore my
'youth', my otherwise healthy state and resassurances about the surgeon led us
to feel optimistic about the outcome of surgery.
The surgery took place
on 16 June and its now 6 July. I'm hoping to return to work next Monday. I was
in hospital for 4 days and during this time received regular pain relief and tutoring
in the management of a catheter. I felt quite well during this time and enjoyed
the rest, companionship of the nurses and patients and regular cups of tea. I
was also able to walk around the ward on the second day.
The surgeon
entered my body via the perineum. He seemed to think this was a good option and
I'm not sure why however the body position during surgery is somewhat contorted,
not that I knew anything about it, and my back ached for 24 hours. My earlier
yoga exercise no doubt helped to mitigate the effects.
The
pathology report after surgery indicated that there was a clear margin; cancer
did not reach to the edge of the prostate. This was an enormous relief, further
treatment will be unnecessary and visits to the doctor will be for checks only.
My time at home has been okay. The catheter was a nuisance but it did cut
the urge to urinate, particularly if I laid on my side. My bed rest at night was
undisturbed, a nice change. The catheter was removed 2 weeks after surgery. This
was a painless procedure and it provided some immediate comfort.
Home
recuperation has been all about coping with incontinence, the pain of surgery
and idleness. There is some urine leakage but this is expected at such an early
stage. I do mild exercises to strengthen the muscles around the wound site. Hopefully
the leakage will stop completely but it is not going to happen overnight.
The pain at the wound site and around my scrotum feels like sunburn and it
doesn't go away. I take four-hourly pain tablets and spend most of my day in a
recliner. Its very uncomfortable to stand in one position or sit upright. However
I am hoping this will lessen enough to allow a return to work in 6 days. The 2km
walk is a daily highlight and I sleep with a pillow between my legs at night.
And one final note: We always ensure my diet is rich in fibre, fruit
and vegetables because the bowels do get disrupted during this period of pain
killers and inactivity.
I'll let you know how I'm going further down
the track and please contact me if I can help in anyway.
It's
been 10 months since the operation and I'm going fine. Have been tested twice
and PSA is not detectable. My general health is excellent and I am engaged in
all of my pre-op activities except two. More about that later.
My operation
site was the perineum and this area is still sore. Apparently nerves are cut and
take some time to repair. The feeling is like mild sunburn and the scrotum is
still a bit sensitive to touch. It is also too sore to ride a bicycle (one of
the pre-op activities0 but I'm okay on horseback.
I haven't experienced
feelings of depression and I was able to go back to work, assuming a regular load,
after 5 weeks of rest, mainly in a recliner. I was very thankful that Wimbledon
tennis was on television during the recovery period.
On the whole the
experience has not caused a setback. In fact, after talking to others, I feel
lucky.
There was only minor incontinence from very early in the recovery
period and I was able to abandon pads within a two or three weeks although there
was one notable occasion when I suddenly felt my legs get wet and a puddle appeared
on the floor. Fortunately that was at home. But incontinence is not an issue.
The only residual problem is the need to empty my bladder thoroughly; just spend
a little more time beyond what feels like the end of urination because there will
often be a little bit more just waiting to burst out as I fold back into my briefs.
The other non-activity is erection. There has been no action in this area
at all. It has comprimised sexual activity with Jean but we still enjoy some intimacy,
perhaps a little one-sided. However, we were amazed to discover that I could still
achieve a mild orgasm and a sense of 'completion' at climax and there is no cleaning
up afterwards! All is not lost.
I am confident that penile injections
would work fine but we haven't sought this treatment despite reminders from my
specialist. There's some diffidence there and the need is not vital.
That's the story to date! Its a good story. It can also change your outlook on
life in a positive way and in small ways that has happened to me. I hope fellow
travellers get similar benefits.
If I can share with anyone on a one
to one level please make contact via the email and I will be sure to reply (provided
your email doesn't get caught in the spam net).
Best wishes and swift
and complete recovery to you all.
Barry Curtis.
It's
just over two years since the surgery and my PSA is undetectable. I keep good
health, still play tennis, ride my horse and don't take any medicines. On the
second anniversary my doctor cut the 6-monthly visits to annual.
Since
June 2004 we have been busy designing and helping with the building of a new home.
You can see the proto-type at www.ralhomes.com.au; its a really interesting concept.
We finally moved in at Easter and I commenced a two-year course in organic farming
to assist us to live in a healthy environment.
I
have found the residual effects of surgery to be relatively minor. I guess there
are two.
The
first is a tendency to fart at the wrong times. My control is okay in public places
most of the time if I find an excuse to stop moving and squeeze. However my family
are regularly treated to some Harley-like renditions at times. Its not a big deal
but it did cause one of my two most embarassing moments in the stillness of a
sitting meditation in my yoga class. I don't do classes anymore. I do however
admire the restraint of my classmates.
The
second is my inability to achieve a hard erection which, of course, might also
be due to age or lack of practice. My doctor regularly reminds me that if I 'don't
use it I'll lose it'. However we do manage intimate moments quite well and I'm
able to achieve a satisfying orgasm. My wife is very supportive (in many ways)
and all in all it is not something we worry about. We have tried some erection
aids with limited success. Viagra didn't work for me. The penile injection was
about 80% but despite the fact that it doesn't hurt I find it all a bit of a nuisance
and tend to avoid it.
That's
my story to date. Life goes on and I'd have to say I've drawn a pretty good lot.
Am
waiting for specialist appointment 6 Sep to discuss latest PSA. Its quite likely
further radiotherapy will be required. Will write further after discussion.
Later:
My
prostate was removed in June 2004. PSA readings registered as undetectable until
Dec 2006. The testing unit installed a more precise machine and I was immediately
detectable at a reading of .09 ng/ml.
In
May 2007 the PSA was .06 ng/ml and the urologist urged immediate radiation. The
radiologist was reluctant to act without further testing. I was tested again in
August 2007 and this time measured .14 ng/ml. We agreed to commence radiation
immediately as a precaution and because we are travelling to Colombia for my son's
wedding in December and wanted to have the treatment well out of the way before
departure.
Only one week later I underwent a planning CAT scan. This was to provide data
which would pinpoint the target area and therefore facilitate future treatments.
The target area is the operation area. The site formerly occupied by my prostate.
On
the following Monday treatments commenced at the Tattersalls Cancer Centre in
Melbourne. Thirty-five daily treatments are proposed. I am required to drink three
glasses of water prior to treatment then strip to my underpants and wander to
the radiation room in a hospital gown. The water has the effect of moving my bladder
away from the target area. The treatment is painless. Six doses of radiation are
delivered to the site from different angles. I am at the hospital for about 40
minutes each day.
I
have had my first week of treatments and I feel fine, more so because my football
team won their way into the Grand Final at the end of the week. It is expected
that I will get tired from the cumulative effect of the treatment. It is also
possible that urine frequency might increase and my bowel movements could be disturbed.
However none of these things are present at the moment.
We
stay in free accomodation in the city which is a real boon because we live about
three hours out of Melbourne and we have a great opportunity to explore the city.
Its a strange way to have a holiday!
Two
days ago I visited my urologist for the 6 monthly check. The PSA was undetectable.
We talked about my erectile dysfunction and bowel incontinence. These 'inconveniences'
are now part of my daily life. Of course I'd rather not have them but they don't
have much affect on my daily routine. Apparently the phrase 'such is life' comes
readily to Indian people. I must have inherited some of their genes.
As
usual, the urologist tried to gently persuade me to try an erectile aid. This
time we made the decision to try a vacuum pump. The injections seemed too invasive
and chemical treatments did not work. At Australian $660 its a bit of a leap of
faith and all we can say at this time is; 'hold on for future reports'.
The
bowel condition requires lengthy morning sessions on the toilet one positive being
the improvement in my sudoku skills. In addition I wear a light napkin and there
is minor 'leakage' during the day and sometimes an 'accident'. Fortunately the
accidents are reasonably infrequent if I'm careful with my diet. The big four;
rice, bananas, toast and boiled potatoes do make a difference!
Nothing
else to report Terry. My busy life continues, bookkeeping for local businesses,
golf once a week and continued development of the organic farm. Our latest challenge
is to try to separate five lambs from their mothers. They always seem to find
a way out of the weaning paddock.
Barry's
e-mail address is barrynjean@bigpond.com.
