Neil
W. and Kathleen live in California, USA. He was 42 when he was diagnosed on April
17, 2008. His initial PSA was 1.3 ng/ml, his Gleason Score was 3+3 and he was
staged T2a. His choice of treatment was robotic laparoscopic prostatectomy. Here
is his story.
3/13/08 - Went for my routine 42-year-old annual physical,
including the routine digital rectal prostate exam (which I have had each year
since age 40). Instead of the usual "everything's fine", I get a "hmmmm", followed
by a "I feel a little something - probably fine - would like to get it checked
out by a urologist".
3/31/08 - Follow-up visit to a urologist. Again -
"hmmmm", followed by "probably nothing, but I'd like to do a biopsy just to make
sure".
4/15/08 - The days leading up to the biopsy were tough for me,
not because I was fearing the possible result, but because I dread the idea of
things entering that part of my body. I had to do an enema on myself that morning
to clear out my system, and the idea of that alone had me losing sleep, not to
mention the biopsy itself - but as usual, the anticipation was much worse than
the action. The biopsy was more uncomfortable than it was painful, and I waited
it out as the urologist took 13 cores from my prostate.
4/17/08 - I thought
the worst was over, having had the biopsy, but then I got the call. The doctor
said simply, "We did find some cancer in there, so you need to come in so we can
discuss your options." I was floored. He made it clear that it was early and microscopic
and the chances of getting rid of it were good, but the word "Cancer" is so powerful,
it was hard to hear anything else he said. I vaguely remember he said that surgery
was my best option, but he said to come in to discuss.
4/18/08 - I spoke
to everyone in my world who I thought might be able to shed some light for me.
My dad - who had prostate cancer and beat it via surgery 14 years earlier; my
friends, who put the word out to their friends and colleagues and flooded me immediately
with potential resources; and my Uncle, a doctor, who reminded me that "if you're
gonna get a Cancer, prostate is the best one to get".
4/23/08 - Met with
my Urologist. He told me I had a Gleason score of 3+3=6, stage T2a. He further
explained that it was a very lucky and fluke find - the nodule they felt that
led them to do the biopsy in the first place ended up being benign, but while
they were in there, they found cancer! Even my PSA was only 1.3 - so there were
no symptoms.
He walked me through the possible treatments - radiation,
hormones, chemotherapy, surgery. Hormones and chemo seemed more for people who
were further along than I was, and radiation seemed too uncertain of a method.
It seemed clear that at my age - 42 - surgery was the best way to get as close
to a form of closure as possible. He made it clear that this cancer is very slow
growing, and while I could "watch and wait", eventually I would want to deal with
it, so why not now? He explained, though, that he only did open surgery - and
that if I wanted to look into the more modern laparoscopic and robotic methods,
I would need to find other surgeons.
We also discussed my weight - at the
time, I was very overweight - 317 pounds - and he emphasized how important it
would be for me to lose weight. Since the cancer did not need to be addressed
immediately, he seemed to think I had a safe window (no more than a year) if I
wanted to take some time to lose weight.
May/June, 2008 - Through research
of my own, decided I was very interested in the laparoscopic and robotic ways
of performing the prostatectomy - seemed to be similar results with easier and
faster recovery. So with the help of various references, met with five surgeons
in the field. Two were too young and inexperienced, and one was not covered by
my insurance, so I ruled them out immediately. I quickly narrowed it down to two
- Dr. Mark Kawachi at City of Hope and Dr. Robert Reiter at UCLA.
Kawachi
had the numbers - he had performed the most, had the highest success rates, and
worked out of a facility that was known for specializing in this type of surgery.
The problem - I didn't feel comfortable when I met him. I don't need a lot of
hand-holding, but his bedside manner and inability to address some specific concerns
about how my weight would be a factor in the outcome of the surgery left me feeling
less than comforted. Reiter, meanwhile, had good experience - and he made me feel
much more comfortable about my options and about the surgery I was about to face.
I went ahead and scheduled the surgery at both places, figuring I had time to
decide.
Also went to see Dr. David Agus at Cedars-Sinai. He's not a surgeon,
but one of the leading researchers in the field (part of Michael Milken's team).
He helped sort out my options, guide me through my nutritional needs, and set
my sights on the bigger picture - "you are now in training to have this surgery
and beat this thing," he told me.
Also had my PSA monitored - 2.6 at one
point, but nothing to worry about. The doctors advised me to continue with my
plan.
Summer, 2008 - Delved deep into a weight loss and exercise routine.
All the doctors I had met with seemed to agree that a six-month window was safe
for me to put off the surgery if I wanted to focus on losing weight. I scheduled
the surgery for 10/17/08 - exactly six months from the date of diagnosis - and
I ended up losing a total of 45 pounds in that time. Among the many reasons why
losing the weight was important - (1) it's physically easier for the surgeon to
do his job if you're carrying less fat between him and your prostate; (2) your
recovery will go smoother if you're carrying less fat; (3) you'll be in overall
better health - with less risk of heart attack, blood clot, etc. - when you're
lying there on the table; and (4) the cancer itself will have a much higher risk
of returning the more fat you have.
Also did a lot of research about the
possible risks and consequences of this surgery. Seemed pretty clear that most
men have some loss of urinary function after a surgery like this - sometimes temporarily
after the surgery, and some for longer periods of time. I spoke to many former
patients, and I was warned to be prepared to wear some sort of pad in my shorts
for up to six months - even in a successful scenario. I was also told that sexual
function should return, but it might take a while. My age was in my favor, but
I began to mentally prepare for these consequences.
September, 2008 -
Time to make a decision. Although I felt more comfortable with Reiter at UCLA,
I was encouraged by various people and doctors to go with Kawachi at City of Hope.
My Cancer was confined and manageable - nothing should go wrong, I was told, so
you want to make sure you maximize your odds and minimize your risk. Therefore,
I was advised, go with the guy who has done the most surgeries, seen the most
different types of bodies, and is most likely to get you through this without
a hitch. You don't need to be friends with your doctor or have a beer with him
- in fact, with the anesthesia, you probably won't ever be seeing him anyway.
So I decided to go with Kawachi. (Note to anyone reading this considering Reiter
- I think he's top notch, and from the many patients of his that I spoke to, it
was clear to me that you will be in very good hands with him as well).
10/17/08
- Checked in for surgery at 5.30am after having been up all night stressing. This
was my first surgery of any kind in my life. As they began to prep me, I confirmed
the surgery I was getting - bilateral nerve-sparing robotic laparoscopic prostatectomy.
The "bi-lateral" was the part I was most interested in - sometimes, if they don't
think they can spare the nerves that control urinary and sexual functions, they
will not sign you up for that, but in my case, it was determined that my cancer
was small enough and manageable enough that they should be able to spare all functions.
I was also particularly concerned about anesthesia - worried that it might not
work. But the anesthesiologist re-assured me and I was ready to be put to sleep.
They wheeled me down the hall and the last thing I remember was seeing the robot
machine in the operating room, waiting to get started. It was 7.30 in the morning.
I woke up at around noon, and slowly drifted in and out of consciousness
for the next hour or two as the nurses prepped to take me to a room and see my
wife and father, who had accompanied me to the hospital. I remember thinking how
sore my stomach muscles were - like I had done 1,0000 sit-ups that morning. I
also remember an intense bloated feeling in my bladder - like having to pee more
than I ever had before. That first 24 hours was a lot of sleep, pain meds, and
tubes.
10/18/08 - They woke me up at 4am to take a walk down the hall.
It was my first time up on my feet since before the surgery. Went well - although
the catheter made for some small and very careful steps. I had been dreading the
catheter, but I could barely feel it. It was more an annoyance than any source
of pain.
Later that day, they taught me how to use my catheter bag and
sent me home on my own.
10/19/08 - Slept OK with pain meds, but could
not turn over, so it was a bit restless. Woke up to a noisy and grumbling bladder
- spasms like a boat rocking and moaning on a stormy sea. Around 2am, passed gas
for the first time, which they say is an important milestone.
Later that
day, walked up the block - first time out and about, though still small steps
with the catheter. Figured out how to put catheter bag on my leg and my pants
over it so I could walk around pretty easily. Getting up and sitting down are
the hardest thing to do, since my stomach muscles still hurt and the catheter
makes it hard to move around.
10/21/08 - Figured that if I was going to
be laid up all day, I may as well do so at the movies, so I called a cab and had
them drop me off at the mall. Saw two movies. Walked six blocks downtown - small
steps, but I made it!
10/23/08 - Went to have the catheter removed. Annoying
process, felt a little weird, but no pain, nothing to worry about, and the actual
removal took less than two seconds. Urinated into a cup just a few minutes after
removal, and seemed to be in full control of my urinary function - pleased to
see that! Wore a pad out of the hospital, just to be safe but have not worn one
since.
Also got my pathology lab report back - they gave me a clean bill
of health. They said the cancer was smaller than they thought - that it was a
miracle they found it at all. They confirmed that it was 3+3=6 Gleason, that it
was confined to the prostate, and that they did indeed spare both sets of nerves.
10/30/08 - It has now been a week since my catheter was removed. As far
as urinary control, I am pleased to see that everything is working, and I seem
to be in full control. The only time I have a (drop or two) leak is when I try
to pass gas, but that has only happened once or twice. The urination itself did
feel weird at first - slight tingle, not painful, but a strange sensation, as
if the urethra is trying to get itself back into shape. So for much of this first
week, there has been this heightened sensation through my urethra when I urinate,
but it's not too bad and it seems to be going away.
The scars on my stomach
from the six incisions are still healing. They are not painful - just sensitive
and strange. Twisting, turning, bending, driving - all those types of actions
are tough to do but getting better every day. I was told by the doctors not to
lift anything more than 15 pounds for 6 weeks, so I am being very careful with
that. But otherwise, I feel mostly back to normal - and it has only been two weeks
since the surgery.
11/6/08 - Walked three miles today. Eager to get back
into an exercise routine. For now, just walking, but soon - I want to run and
swim again.
Tested my sexual functions this week. The hospital put me on
a half-dose of Viagra every day, and every thing seems to be working. Erections
are sometimes not as hard as they used to be (but sometimes they are). Ejaculations
are mostly dry, which is weird. Sensation is mostly the same, although quicker
- a little more heightened at first, then subsiding quicker than usual after ejaculation.
Overall, the sexual function is good, but it involves some different sensation
that take getting used to.
I need to get my PSA checked at the 1 month
mark, and then every three months after that. Wish me luck!
And for all
of you about to face this journey, know that It is hard, it can be scary, and
there are some moments of pain involved. My advice is to arm yourself with knowledge,
go with the decisions that increase your odds. And know that - you are not alone,
and more importantly - you can do it!
Please feel free to e-mail me at
emailvault@earthlink.net if you
have any questions or need any support in your journey. I'm happy to help in any
way I can!
Neil
