Paul
McArthur lives in Florida - USA. He was 44 when he was diagnosed in August 2004.
His initial PSA was 10.4 ng/ml, his Gleason Score was 6 and although he does not
state his staging it seems from his story that it would have been T1c. His choice
of treatment was laparoscopic radical prostatectomy. Here is his story.
My
name is Paul McArthur. I am a single guy, never been married. I was born in June,
1960. I was 44 years old when I was diagnosed with prostate cancer in August 2004.
I
had a physical in 2001. My doctor ordered the usual blood work. At that time I
was 41 and so he did not order a PSA. However, by some miracle a PSA was performed.
I didn't know it at the time, but, men should start having a PSA test at the age
of 40 if their father has Prostate Cancer. My father was diagnosed with Prostate
Cancer in 1989.
The results of the first test came back a 12.0 ng/ml.
Here is typically how they react to your PSA when they find out what it is: 0
is "Good", 0-4 is "Ok", 4-8 is "We need to watch this carefully", anything over
10 is basically... "You're not dead, yet?"*1*
The
doctor ordered a 2nd PSA test. The results of that test were a 10.0 ng/ml. So,
he ordered a biopsy. I went to the urologist (a.k.a. the barbarian) he recommended.
That urologist took 6 samples. They all came back negative.
The procedure
was uncomfortable. It's like using an electric cattle prod a.k.a. "the probe"
along with curling iron a.k.a. "a spring-loaded needle/harpoon". It's not all
that painful. But, it is uncomfortable. I was ready to go home after the 3rd sample.
I was awake throughout the procedure. There was no pain medication or anaesthesia.
One important thing to note is he only took 6 samples. A true Gleason
Score is based on 12 samples, that's 2 samples from 6 different areas of the prostate.*2*
My only thought is he didn't bother taking anymore samples because I was only
41 years old. At the time I didn't know any better.
I decided that it would
take a couple of years before I had another biopsy. I waited three years until
a co-worker gave me the "guilt's" and convinced me to go have the blood work done
again. The blood work isn't that big a deal. It's the biopsy.
I went to
my general practitioner in April 2004. The 1st thing he did was the DRE (Digital
Rectal Examination), you know... turn your head and cough. That's not that bad.
It's the biopsy that I didn't want to face. Unfortunately, the DRE can cause your
PSA to be elevated. They didn't tell me that until AFTER the DRE. I had to wait
a week to give the PSA a chance to go down before I could get the blood work done.
I didn't get the blood work done until May because my mother was diagnosed with
a common bile duct tumor and I went to Tampa to support her during that period
of time.
I had the test done and got the results back in June. The PSA
was a 10.4 ng/ml. The G.P. wanted another biopsy. I wanted another urologist.
This time I went to the one my father used. Dr. Kaz said he was going to do a
minimum of 12 samples. I said, "You're going to put me to sleep, aren't you?"
In his Indian accent he said, "Yes. I do not want to have to chase you around
the table." You got that right, buster. I had the biopsy in July.
He put
me to sleep for the biopsy. He did an awesome job. The experience was infinitely
better than the first time. He not only biopsied the prostate he also did a cystoscopy.
Never trust anybody who puts you to sleep.
After
the biopsy, they tell you there's going to be some blood. There's no other explanation
to go with it.
Well,
there are 3 bodily functions, 1) pee, 2) poop 3) ejaculate. The first thing you'll
find out is there's blood in your urine. After the biopsy I had blood in the urine
for about 2 days. I had to 'clean' the system out prior to the biopsy so, it took
about 2 days before I really 'pooped'. There was blood in the stool for about
2 days as well. Well, after freaking out over #1 and #2 you can imagine what it's
like to try #3. It took me a good week or so before I tried #3... and wow. What
usually comes out kinda milky white was ruby red. Talk about freaking out. It
took about 2 or 3 more ejaculations before all of the blood cleared out of my
system. They just don't tell you that....*3*
I got the results of the biopsy in August. They came back positive. The
Gleason score was a 6 well on the way to being a 7.
Six areas of the Prostate
were harpooned, I mean 'sampled'. You'd think Captain Ahab was going after Moby
Dick, but, I digress... (c:)~
Here are the six areas and the scores I received.
This is so typical. I usually tend to score high on tests. Ha ha.
1. Right
apex - 7 (4+3)
2. Right mid gland - 7 (4+3)
3. Right base - 6 (3+3)
4.
Left apex - 6 (3+3)
5. Left mid gland - 6 (3+3)
6. Left base - benign (0)
Dr.
Kaz ordered a CT scan and bone density scan. Both came back negative. He also
suggested surgery. His 'specialty' was the traditional radical prostatectomy.
I did the usual "I want a 2nd opinion" routine. I consulted a urologist
at Mayo Clinic in Jacksonville as well as one at Shands Hospital. Both said I
was too young for anything but surgery.
I wasn't ready for surgery. I had
been training for a rowing competition in October. So, the Dr. Kaz gave me a "4
month" shot of Lupron on September 7, 2004 to slow the growth and hopefully shrink
the prostate.
Dr. Kaz recommended the Lupron. The Mayo urologist was against
it. Dr. Locke recommended it. Mayo said the Lupron causes the prostate to become
fibrous and more difficult to remove.*4*
I can appreciate his comments. I noticed some improvement urinating after having
the shot.
There are several things about Lupron they don't really go into
much detail about. The first is Lupron causes chemical castration. What does that
mean? Let's just say that after about a month of having the shot my ejaculate
was just about nil. They didn't tell me that would happen. I just figured it was
'good' preparation for what would happen after the surgery anyway.
I competed
in the rowing competition and scheduled surgery for November 16, 2004. I opted
for a laparoscopic radical prostatectomy. Nobody in Jacksonville, FL did that
type of surgery at the time. So, I opted to go to Ocala, FL and have the surgery
performed at the West Marion Community Hospital in Ocala. The doctor was Dr. Russell
Locke with the Urology Center of Florida .
The surgery was scheduled for Tuesday, November 16th, 2004.
The surgery
was supposed to last 2.5 - 3.5 hours. It went over 4 hours. I was still released
the next day.
The surgery was on a Tuesday. On Thursday I felt like I
could go to choir practice and make it through the entire 2 hour practice. My
dad went with me. I monitored the bag strapped to my leg to make sure it was 'draining'.
I didn't know what to expect, though. Well, it should drain constantly, even if
just slowly. I didn't use the markings on the bag to keep track. Towards the end
of sectionals I snuck out with my father to check it. It looked like it stopped
draining. The what-to-do-after-surgery paperwork didn't cover that.
I had
enough sense to go to the emergency room. By the time they got around to me I
was ready to get relieved... big time. They put in 60 cc saline solution and got
back 700 cc. I was ready.
On Friday my body said, SLEEP!!! I obeyed. If
I was awake I was eating. If I wasn't eating I was asleep. That was it. I did
the same thing on Saturday.
On Sunday, I finally took a shower. Oh!!! You
never thought of that, did you? At some point your nose let's you know. (c:)~
I watched church on TV. But, that afternoon I DROVE myself to choir practice.
I was feeling alive and awake again.
"I" drove to Ocala with my father
a week after the surgery to get the staples and catheter removed. "I" drove down.
It's about a 2 hour drive.
Talk about a humbling experience.
They
asked me to strip from the waist down and cover up with this oversized piece of
paper they called a towel. The nurses were very professional and considerate of
what they were doing. I never was embarrassed. It was just another process I had
to go through. And, I was ready to get rid of the catheter.
The one nurse
removed the staples first. She did the first staple before I realized that she
had removed it. I thought there would be a lot of tugging and ripping of flesh.
It was effortless.
The other nurse was in charge of removing the catheter.
Talk about weird.
A Foley catheter is held in place by a little balloon
up inside the bladder. The moment she released the air I could tell… and it felt
good.
The most humbling part of the experience was about to come. She
'irrigated' me with 150 cc Saline solution, I think. She said the reason for that
was to make sure I still 'drained' once the catheter was removed.
She did
not mess around with the removal. She didn't try to prepare me much… which I probably
would've screwed up anyway. She just went for it.
The memory lasted longer
than the 'pain'. It wasn't that painful. But, she looked like a dominatrix snapping
back her whip… not that I know anything about a dominatrix or a whip. The whole
purpose of doing it like that, I'm sure, was to minimize the exposure to bodily
fluids.
Then, the fun began. Oh, you thought THAT was the most humbling
part of the experience. Wrong.
Those of you who've changed a baby's diaper
or have seen the water fountain with the little naked cherub peeing will know
what I'm talking about. The nurse had a plastic urinal to catch the 150 cc that
came out. But, talk about having absolutely NO bladder control. Gee. And, to make
matters worse… she didn't have the urinal 'lined up'. Oops. Sorry. It was messy.
I
kinda missed that internal catheter now.
The nurse gave me 2two pads to
go. These were manly pads. Women will know exactly what I'm talking about.
She
asked if we were going to stick around Ocala or go back home. That shocked me.
I must've missed something. We were going home. She seemed kinda hesitant. The
one reason was she said they needed to know that I was still 'draining' within
the next fourhours. If I wasn't then I would have to return to Ocala and have
the internal catheter reinserted. What? Ouch. I don't think so. We left.
Before
we left Dr. Locke stepped in and spoke to me for a few minutes. He said he was
very concerned during the surgery. It was a difficult surgery. He said he did
not remove the lymph nodes, in part because of the time it took to get the prostate
out, plus he just didn't feel that their removal would contribute much in the
spread of cancer or the detection of whether cancer has spread.
He said
the cancer was not encapsulated... meaning that there was a 'break through' on
the left side, it was not all contained within the prostate. However, he said
the margins were good.
The final Gleason score on the pathology report
was an 8. If you'll remember, the previous score was a 6/7. Also, if you will
remember, the score is the sum of the ranking of two samples. The two samples
were a 3 and 5. So, one sample was very 'bad', the other was so-so.*5*
After he spoke with me I left with my father. Talk about "draining" a.k.a
"leaking". We stopped half way between Ocala and Stark so I could get out and
leak. Then, we stopped in Stark for lunch. I used the only pad I had left. It
was not getting pretty.
After lunch we stopped half way between Stark and
Jacksonville. Again, I just leaked.
By the time I got to my parents house
I was just about soaked. I grabbed my stuff threw it in the car and headed for
Walgreens before they knew what was happening. Walgreens had just ONE 52 count
package of pads for men. It had MY name on it.
Oddly enough that was the
lowest point in everything I'd gone through. I came the closest to being depressed
at this point in time. But, Phillipians
4:8-9…
Pads suck. I put up with them for just 2 days after the catheter
was removed. After having Thanksgiving dinner with my family I went home and started
surfing on the Internet.
I
started with the word catheter and that led to External Catheter.
An external
catheter is, essentially, a defective condom with glue. It has a 'tip' that connects
like the internal catheter to a tube that connects to a drainage bag. It works
very well, most of the time. You can go look up the 'parts' at this
web site to see what's available.
I was blessed in that I found the
information on the Internet and found EXACTLY what I needed at a small pharmacy
just down the road from me. That place is awesome. Unfortunately, Walgreens and
CVS will eventually force little pharmacies like this out of business. And, Walgreens
and CVS don't carry these supplies.
The external catheter comes in various
shapes, sizes and compositions. The shapes don't have much impact; I believe,
other than to avoid copyright infringement issues.
There are several 'interesting'
things about external catheters. The first is trying to find the size that 'fits'
you. The Hollister brand generally has sizes that are 1 mm larger than the Mentor
brand. Ok. Who'd want a 'mentor' like this?
For those who have ego's the
size of one of these things… get over it. Here's a recommendation. Don't shoot
for an exact size. There's a little problem that they don't tell you about. Shrinkage.
Yes,
shrinkage. If you buy something that fits exactly right you'll find that by the
end of the day that shrinkage kicks in big time and it may have a tendency to
come off. The technical term would be "system wide failure". So, go with one size
larger than what will fit you exactly. (I was going to make a comment about playing
a game called "Where's the hot dog" but, decided not to.)
I would highly
suggest one thing. Shave. Hair does bad things for sealing things up. You'll want
direct contact with as much skin as possible.
One thing about the 'adhesive',
you can glue a car together with it. You'll want to take a bath each night to
try and wash the residue off. Trust me. You'll be tempted to over do things after
the surgery. A nice hot bath does wonders for soreness.
You might ask,
So, just how do you measure up? You got it. Try this
site on 'for size'.
The Hollister feels more 'natural'. The Mentor
feels more 'plastic'. Both work well. The Mentor gives you the option of backing
down 1 mm if you need. The Hollister gives you the option of going up 1 mm if
you need.
Latex versus Non-Latex. The only issue I've had is with the latex
leg straps that hold the bag to your leg or calf. If you attach the strap too
tightly then you may have an allergic reaction. If so, try applying hydro-cortisone
cream and switch to the other leg for a few days. Or, cut up a paper towel and
put it between your leg and the strap. They do make fabric leg straps. They attach
with Velcro. Those work fairly well.
One thing about the leg bag… buy the
one with the Flip-Flo attachment. Otherwise, all it has is a little green cap
on the bottom of the bag… and that gets VERY messy if the cap comes off accidentally.
Trust me. It will. On the trip back to Ocala I was planning to do a flow analysis.
I stopped by the hospital to speak to somebody before I saw the doctor. When I
got in the car my shoe was soaking wet. The cap had come off. I tried to salvage
the situation but, I peed all over myself. Needless to say, I was VERY emotional
and couldn't handle telling the doctor what had happened. I survived and went
back later that week. I just haven't done a flow analysis since. Let's just say
I could hit a target about 6' away now.
Wear loose pants. Buy a size larger
if you need. Tight fitting pants lead to system wide failures. Buy something like
flannel sleepwear for at home… work out pants for outside. I would also suggest
using a pad for backup… just in case.
Question: Boxers or briefs? Answer:
During the day - Boxers. The external catheter works well during the day. Don't
forget the pad for backup. At night just wear briefs and the pad.
Your
doctor, or nurse, may not approve of you using an external catheter. That was
the reaction the nurse had when I told her what I was doing. I would've fought
her tooth and nail to keep mine. But, it never came down to that. The issue here
is infection. Don't want to get an infection down 'there'. That's where nightly
baths will help, I believe. Fortunately, the doctor didn't have any problem with
that.
On December 29th I had some bad news. I didn't have any STD anymore.
So, I had to go back to work! Hah! Where's your mind? STD=Short Term Disability.
My 6 weeks were up. I had to go back to work.
I struggled with incontinence
for two or three months. It wasn't until I got down on my knees and started praying
again that the flood gates closed. I'm serious. The first day I started praying
was the first day I regained continence.
What about sex? Let's just say,
"What sex"? After the surgery it took me about six months to even TRY to do 'it'.
I was on a business trip and there was something a little risqué on TV when the
motor kinda got jump started. But, it was anti-climatic. It was like the orgasm
stopped before it was even finished. It was weird not having anything come out.
I realized just how much ejaculating contributed to the orgasm. Since ejaculating
wasn't happening anymore that kinda minimized the fun and the orgasm.
I
counted the number of times I tried to do 'it' during 2005. I tried twice in June,
September and December. After that, I haven't kept count. Suffice it to say that
I don't think I've done 'it' as much since then. Don't get me wrong. I like it
better this way. I know what I miss but, I know how much I really liked it before.
This is just better for me.
After the surgery the Dr. Kaz continued with
the Lupron. It just so happened that they'd JUST come out with a subcutaneous
injection of Lupron in January 2005. That is simply a little vile about the size
of 2 or 3 short toothpicks that fits just under the skin.
What that means
is less pain and less emotional 'spiking'. Instead of 3 or 4 shots once a year
I would just get the vile replaced once a year. The Lupron would be slowly released
throughout the year.
The "4 month" shot cost about $1,500. The sub. inj.
cost $6,000. Insurance has been goofy. They would pay all but $1,000 each year
except last year (2007) they paid in full.
I had a sub. inj. in 2005, 2006
and 2007. Dr. Kaz was able to remove the 1st vile in 2006. However, in 2007 I
had put on some weight and consequently he couldn't "squeeze" out the old one.
Dr.
Kaz told me he wanted to discontinue the ADT this year (2008). I've had 3 years
of PSA's less than 0.01. I'm not sure if I want to get rid of my 'insurance' or
not. I have experienced 2 of the side affects, hot flashes and mood swings. The
mood swings really aren't mood "swings". I just have to 'check' my thinking at
times and think positively. I just tell people I'm in touch with my feminine side.
The
good news is... I'm happy this way. I wouldn't change a thing... seriously. God
is good.
I've posted my 'diary' on my personal
web site... under the Prostate
Cancer link. However, this pretty much covers everything that's there, I think.
During this time period my mother was diagnosed with a common bile duct tumor.
She died on February 3, 2005, just after my surgery. Personally, I think she concentrated
more on me and my problems than her own. She was a saint. Her mother died shortly
after that. Her mother had breast cancer about 30 years ago and dealt with Alzheimer's.
My father just passed away a week before Thanksgiving last year (2007). He was
diagnosed with prostate cancer back in 1989. He took the watchful waiting approach
and did take some Lupron at the suggestion of Dr. Kaz. But, he hated it. He said
it made him into a girl. So, he stopped taking it for a little while last year.
He didn't handle the mood swings very well. He was born in 1933 and was 74 years
old when he died.
I am doing fine other than putting on some weight. I'm
6'1" and weigh about 220 lbs. My G.P. has me taking liquid vitamins, glucosamine,
calcium, vitamin D and fish oil. I just had some blood work done at the end of
January (2008). The G.P. put me on 50,000 IU of vitamin D for a little while.
I have 10 pills and take 1 twice a week. I really needed the glucosamine for the
arthritis symptoms I was experiencing. They went away once I started taking the
glucosamine.
I started having some problems with kneeling back in December.
I mentioned that to my chiropractor and she said the scar tissue was probably
cutting off the circulation. She started working on that and I don't have that
problem anymore. She's awesome. Of course it felt like she put a spear in my groin
but, it was quite effective.
Oh, one last thing. It's something that is
on my mind a lot and is just irritating. I quit my job on September 11, 2006 and
bought a franchise called "Goin' Postal". If you want to see me then go to www.goinpostal.com
and look up zip code 32217. After I quit my job I found that the insurance companies
would not give me health insurance for 5 years after my surgery. Fortunately,
I have COBRA insurance and my former company, Blue Cross Blue Shield of Florida
will convert the policy to an individual policy at the end of next month. The
thing is… am I really going to die within the next year and a half? Will discontinuing
the Lupron open the flood gates again? It's been a little over 3 years since the
surgery. (November 16, 2004 to February 2008) I'm kinda living life like I only
have a year and a half left to go. I'm starting to wonder what I'm going to do
if I exceed that time limit.*6*
I
mean I can stay alive and struggle with all of the problems we have here on earth
or I could die and go to heaven and not worry about them anymore. What's the big
deal, then?
I go for another PSA in a few days, when I get around to it.
Then, I have another appointment with Dr. Kaz. He'll just say hi and tell me what
the PSA is now. We'll see.
Paul's
e-mail address is: stroke4@aol.com
NOTE
1: What Paul says here may well reflect the views expressed by some doctors, but
in fact PSA valuesvery much higher than 10 are recorded, with men at that level
surviving for many years - see Mentor
Experiences indexed by PSA and page down.
NOTE
2: The number of needles used in a prostate biopsy varies. Six needles was the
standard for many years and still is in many countries. The practice in the USA
has moved to use a minimum of 12 needles, although this is not a universal rule.
Some practitioners also use more than 12 needles.
NOTE
3: The amount of bleeding and the length of time it lasts varies considerably
from man to man. Some men have barely a tinge of red, while others have blood
in urine and ejaculate for up to six weeks.
NOTE
4: Like so many aspects of PCa diagnosis and treatment there is considerable disagreement
on this aspect of neo-adjuvant hormone therapy. Some surgeons will not operate
on men who have had the hormone therapy: others regard it as essential. The studies
quoted in a recent summary
(large pdf file) show no advtange for neo-adjuvant hormone therapy with RP. Other
stduies demonstrate that Lupron can change th pathological profile of the cells,
making them appear to be more poorly differentiated - i.e. a higher Gleason Grade.
NOTE
5: Paul uses the term 'two samples' in his description of the evaluation of the
Gleason Grades to calculate the Gleason Score. In fact the Score is calculated
by looking at two focii in the same sample - see Gleason
Grading for more detailed information.
NOTE
6: Statistically, Paul has many years ahead of him. The median age for PCa deaths
in the USA is still in the mid-80s, so half the men who die of the disease are
over that age. More than 90% of the deaths are men over 70. Paul is coming up
to 50, so he's probably got 20 years or so!!
