Eric
and Pam Taylor's Story - 30 November 2000
Eric
and Pam Taylor live in the City of Wollongong, NSW, Australia. Diagnosed at age
56 on 21 August 2000, Eric's PSA reading was 7, Gleason 9, with cancer in 6 out
of 10 cores in his biopsy results. He was not given his staging, but from his
story it seems that it would have been T1c. He selected a Radical 'Perineal' Prostatectomy.
Here is their story:-
Being
diagnosed with prostate cancer came as one hell of a shock as I had none of the
'typical' symptoms. The first indication I had a 'problem' was in July 2000 when
I had my annual medical check-up and my GP ordered the usual blood test. A few
days later my GP phoned to say he wanted to see me as one of the blood test results
was higher than he'd like. During the consultation he indicated my PSA was 7,
and anything over 4 was a concern. He performed a digital rectum examination (DRE)
and recommended the name of a Urologist I should see ASAP.
My
PSA reading two years ago was 3. Had I known then what a PSA test would
detect,
there is no doubt I would have not waited so long for my next 'annual' check-up.
At
my first appointment with the Urologist, he also performed a DRE and indicated
my prostate was enlarged and that I should have a biopsy. He also outlined the
three most common forms of treatment for my age (56), ie surgery, hormonal treatment
and radiotherapy.
A
couple of weeks later I had the ultrasound immediately followed by the biopsy
during which the Urologist took 10 core samples. He later said that most Urologists
normally only take 6 samples. But by taking an extra 4 samples cancer is often
detected which may not be found in the normal 6 cores.
A
week or so later the Urologist advised 6 of the 10 were 'positive' and that the
cancer was "very aggressive". (There was no mention of a Gleason Score. It was
during a subsequent visit after I had read a bit that I asked for and was advised
my Gleason Score was 9.)
The
next day I had a whole body bone scan and the day after that a pelvic area CAT
scan. Although both results indicated "all clear", the Urologist said the aggressive
nature of my cancer worried him and recommended a pelvic lymph node dissection.
This involved keyhole surgery under general anaesthetic and an overnight stay
in hospital.
There
are two forms of a Radical Prostatectomy. One method involves an incision
through the abdomen where the surgeon will first remove the pelvic lymph nodes,
send them off to the pathologist while the patient is still under anaesthetic,
then either continue with or abort the prostatectomy depending on the result.
The 'perineal' method (described later) involves the need for a separate
operation
to remove and check the pelvic lymph nodes but has the advantage
that the pathology is not 'rushed'.
Three
days later the Urologist advised no cancer cells were detected in lymph nodes,
so there was some probability the cancer had not escaped the prostate. He indicated
all treatment options were open to me - but the decision was mine to make. He
showed me a 'Partin Table' that indicated with Gleason 9 there was only a 30%
chance of success ie. he could "get it all" with surgery. He suggested I see an
Oncologist with whom he had discussed my case. The Oncologist indicated statistics
showed a 70% success rate with 3 months of hormone treatment followed by 7 weeks
of radiotherapy then 3 more years of hormone treatment. Despite this promising
information some of the side effects worried me a little so I decided to read
some more. I also went to a local Support Group meeting. But I found the information
I was reading and hearing confusing and sometimes contradictory. But all agreed
that I had to believe the treatment I decided on was 'right' for me.
I
eventually chose surgery. Why? It appeared to me the best sequence of treatments,
then if required, radiotherapy followed by hormone treatment if all else failed.
I felt this would give me "three bites of the cherry" - if I needed them and perhaps
a better chance of a successful outcome.
On
the Monday 16th October 2000, the Urologist started a Radical 'Perineal' Prostatectomy.
This involved a 'U' shaped incision between the scrotum and anus and a separate
incision for a drain tube. Later that day the Urologist came to see me and said
all went well, ie. there was little loss of blood so there was no need for a blood
transfusion (I had given two units of blood just in case) and the prostate had
come out 'nicely' (what ever that was supposed to mean). The day after surgery
all seemed to be going well - there was no sign of infection and none of the pain
I was told to expect - just a little 'discomfort' when passing 'wind'. Breakfast
was fluids only but I was upgraded to a light diet lunch and dinner.
On
the second day (post operation) something happened that I don't recall reading
about in any of the books or YANA Journals. I suddenly became very emotional (yes,
openly crying). The nurses did their best to calm me down by suggesting it was
probably due to a build up of a number of things, ie stress incurred during the
treatment decision process, anxiety about surgery, worrying about the forthcoming
pathology result or about being emotional. They tried to assure me that getting
emotional was just part of the healing process after the trauma of major surgery.
When things got the better of me again the following day, they suggested and I
agreed to a visit from a social worker. The social worker also told me it was
"quite normal" to get emotional (not for me it's not, I was still thinking!!)
and what I was going through emotionally was very much like loosing a loved one
(wife, child) that is, I was grieving - for the loss of the person I was before
being diagnosed with cancer. This seemed to make sense and I guess I started to
believe what they were all telling me and not what I was thinking, ie that I was
"losing my mind".
Just
after lunch on the Friday, four days after the operation, my Urologist arrived
with the pathology result. He said there was a lot of cancer in the prostate but
the majority was Gleason 7, only a couple of bits were Gleason 9. Also in two
areas the cancer was at the edge but there were no surgical margins. He then suggested
I should "go home" to continue the recovery process but it was OK to stay longer
in hospital if I wanted to - I was home by 3pm. The drain tube had been removed
the previous day but I went home with a catheter in place.
Ten
days after the operation the staples (clips) were removed from the main incision
area and I was advised that all was healing up OK. A watery fluid and occasional
blood was still draining from the separate incision but I was told this would
stop in a day or two. Five days later the catheter was removed and an X ray was
used to check the area where urethra had been rejoined to the bladder. This indicated
all was well but now came the time I was most concerned about, ie. being incontinent.
My Urologist simply said expect to be 'wet' for a few days or possibly longer.
I am happy to say that incontinence has not been a problem. The 'other' side effect,
impotence is currently a problem but does not greatly concern me at this stage.
I almost feel like my 'old' self again in body and mind and although the pathology
result was much better than I expected I guess I know that I am not "out of the
woods" yet. I will wait with bated breath for the next few PSA tests. But for
now things are looking up and I know with some certainty where things stand -
which was another reason for choosing surgery.
Some
have said I have been 'lucky'. Pam and I now believe it was the great support
and the prayers of all my family and friends that has got the better-than-expected
result (to date) for me and inner calm for Pam through the 'ordeal'.
[Update
18 December 2000] PSA currently "less that 0.1", next blood test in 3 months.
[Update
March 2001] Current PSA remains at less than 0.1.
[Update
March 2002] Current PSA remains at less than 0.1. Eric is enjoying life to the
full.
[Update
September 2003] Current PSA remains at less than 0.1.
Eric retired in October 2002 and enjoys spending more time with family, making/editing
home and holiday videos, working for his local church, etc, when not tripping
around Australia in a caravan. is enjoying life to the full.
[Update
December 2004] Eric hasn't had a PSA test lately as he has been too busy travelling
around Australia with Pam in their caravan. They had a great time on their 6 month,
27,000 km (16,000 plus miles) journey. They had a great time, took lots of photos
and have 25 hrs of as yet unedited video.
[Update
March 2005]
My
PSA is still less than 0.10 ng/ml - the blood test was ordered along with the
usual annual check up stuff by my GP and he gave me the result. I was due to see
my Urologist in December 2004 but phoned his receptionist to say my GP had given
me my result and would he still want to see me - she said as long as you are OK
(no problems you wish to discuss) there's probably no need.
[Update
November 2005]
.Just
confirming I visited my Urologist today and my PSA remains below 0.10 ng/ml. He
said it's very rare that PSA has been known to rise after 5 years - post operation
but after 10 years it has not occurred to his knowledge. Which is all good news
for me and I thank God for his blessing..
[Update
November 2006]
Now
to the stage were I get a blood test once a year. I phone for the result one year
and visit my urologist every other year. Latest result was given to me today by
the urologist's nurse who said my PSA was "Normal and you can't get anything better
than that!". Haven't had a result quite like that before but it sounds good ..
:-)
[Update
September 2007]
ecome
what we Australians call "grey nomads". In a recent mail he says:
We
had 6 weeks in New Zealand earlier this year and just returned from 10 weeks around
SouthEast Queensland spending much more time in each place - great.
In
passing he mentions that his PSA is still undetectable - there is indeed life
after PCa!!
[Update
December 2008]
Eric
and Pam have had another great year for travelling - around Australia in February/March:
seven weeks cruising Alaska’s Inside Passage on a small ship only 113 passengers
and 73 crew – much better than those big ships, then 5 days - Anchorage, Denali
N.P and Fairbanks. Then self drive - Vancouver Island, Vancouver, Whistler, Kamloops,
Jasper, Lake Louise, Banff, flight to Toronto and then Halifax then back to Vancouver
for the 15.5 hr flight home. As a sweetner they had ten days in November on Lord
Howe Island. Oh! and as far as his PCa is concerned he says:
All
is well with my PSA, ie. still less than 0.1 and cholesterol, sugar, vitamin D
and blood pressure are all good but I will continue to have vitamin B12 shots
3 times a year though.
Eric's
e-mail adress is: outback21@optusnet.com.au
