Robert
S and Merideth live in Connecticut, USA. Robert was 52 when he was diagnosed on
January 18 2006. His initial PSA was 5.2 ng/ml, his Gleason Score was 6 and he
was staged T1c. His treatment choice was Robotic Laparoscopic Surgery. Here is
his story:
Firstly,
thank you to all who inputted their story previously. It helped me and I hope
my story helps someone as well.
I had NO symptoms. I did not have annual
physicals. I thought I was healthy. My dad was diagnosed with prostate cancer
some time ago. My mother, who I phone every weekend would start our conversation
with...did you get your PSA checked? I, for a very long time, said not yet but
I will make an appointment next week. Not wanting to hear what I considered "badgering"
(thank goodness for badgering mothers), I did make the appointment and went November
4 2004, my PSA at that time was 4.2 ng/ml. The doctor said to me ..don't worry
about it, you don't have cancer and I left his office.
That number did
bother me. For some reason I then called the urologist (where I had a vasectomy
in 1997) and told him I was bothered by the 4.2 number.
He said, let's
take it again, we need more numbers on the curve. In March 2005, it was 3.8 ng/ml.
He then said come back in 6 to 9 months. I went back after Christmas vacation,
January 6, took the test and the PSA was 5.2 ng/ml. He said, not good, we need
to biopsy. That was done the next day, Friday, in his office (I didn't feel a
thing and would not say it even rose to the level of discomfort). Following Friday
got the results. Left side on the prostate (6 samples) were clean. Right side
was 75% cancerous in 5 of the 6 samples taken, Gleason 6.
I was depressed
for two days. Thought my life was over. Wondered what my wife and four kids were
going to do without me? After two days (lost 10 pounds) I realized this was not
doing any good and I needed to research and figure out what I was going to do?
Meanwhile,
doctor scheduled a bone scan and cat scan. While taking the bone scan, the technician
led me to believe that the cancer had spread to my brain!!! because he saw a "hot
spot" there. Now my research tells me that I have six months left to live. That
was a very bad night for me. Anyway, the results came back NORMAL. I was shocked,
how could this be? The technician didn't know what he was talking about.
The
consultation with my urologist covered "his" options, radical prostatectomy, radiation,
freezing and seeds. I had mentioned to him, what about this new procedure called
the da Vinci robot method? He said well the end result of that and the radical
is the same! Further discussion resulted in him referring me to Dr. Mark Kawachi
at the City of Hope.
On February 21, 2006 from 3-6pm I had the procedure
done. The NEXT DAY the doctor asked me if I wanted to go home. I physcially could
have, but emotionally I felt that I should spend at least 24 hours in the hospital??
So, I said how about I go home tomorrow, he said OK.
That day is today.
My wife drove me home this morning to San Diego (about 2.5 hour drive).
I
am moving a little more slowly than usual. I am a little black and blue. I don't
really feel much discomfort except when going from a sitting to standing OR standing
to sitting position. So, I do it carefully, no big deal.
I am wearing a
cathether, again I find it no big deal. It is not uncomfortable. In fact, I don't
have to get up in the middle of the night now to go to the bathroom.
I
have an appointment next Wednesday to follow up with the doctor. He will remove
the cathether and discuss the results of the prostate pathology with me. That
is my next milestone of concern. He did say to me, however, to the naked eye everything
looks good. And, that he did not remove the nerve bundles.
Obviously, my
hope is that the cancer was confined. If not, then I will set out on my next research
project of how to deal with that. But, for the next week I am going to try to
relax and heal.
My advice to you is
1.)
don't let your mind go to all the bad things that can happen, mine did and so
far so good and
2.)
don't take the first doctor's advice. Do some research on your own, there may
be something better for you.
I do highly, highly recommend Dr. Mark Kawachi.
He has done 1000 of these operations and he is a very nice guy.
Got
a great night sleep last night at home. Sleep in the hospital was interrupted.
Nurses always wanting to take blood pressure, temp etc... Also, in the hospital
I still had that inert gas that they pump into your stomach. It's more comfortable
to walk and try to pass it, then lay in bed. So, the second night, I walked from
2 to 3 am in circles in the hospital room.
One
concern I had was sleeping with the catheter. I didn't want to accidentially pull
it out. I first changed to the larger bag for night sleeping, that went well.
I propped myself with pillows so I wouldn't turn over. Seems like I did roll on
my right side, and the velcro that secures the line from the penis to the leg
did undo. I immediately realized this when I awoke, or maybe I awoke because I
felt tugging on my penis. Anyway, no damage done, I replaced the velcro piece
and started my day.
My
next concern was taking a dump. Today is the fourth day since the last time. It's
kind of amusing, this is something I've done for 52 years and now all of a sudden
I'm feeling some trepidation. It's really because of the location to the surgical
site and my concern is discomfort. The doctor did prescribe stool softeners and
I have been eating oatmeal and dried fruit in addiiton to other foods. Well, this
morning it happened, and it actually felt great.....another milestone.
Generally
speaking, I feel good. Again, moving a little more slowly than usual. And, any
movement requiring strain on the stomach muscles has to be done slowly. My wife,
kids and myself are cautiously relaxed today, as compared to the very stressful
pre-surgery time. Cautious because I still have that appointment next week to
discuss prostate pathology with the doctor.
Drove
up to the hospital the night before my next day appointment to discuss prostate
pathology and have the catheter removed. I have had the catheter in for six days
now. While at the hotel, I noticed blood and scab material in the urine bag. It
was a little worrisome at first, but figured I was in the right place. Only two
minutes from the hospital. I relaxed and drank some fluids and further urination
was clear. Later, I realized what probably happened. In the car I had stretched
way forward in order to pick a book up off the floor. I probably pulled something
at that point.
Next
day met with the doctor's nurse, and received in writing the official pathology
report. It had the best result that I could hope for........ CANCER CONFINED TO
PROSTATE.... will never forget those four words.
It's
somewhat surreal at first, kind of like you're dreaming, and I did ask myself,
is this really happening? But, there comes the point you say, yes, this is really
good news.
Nurse
also removed the catheter. She pumps in about 4 oz of saline solution, then asked
me to take a deep breath and exhale. As I exhaled, she pulled out the catheter.
Did not hurt at all. She then asked me to hold the solution, and pee for 3 second,
hold for 3 seconds, pee again for 3 seconds. I did this 4 times. I had total control.
I did wear a pad home but did not need it. Never used a pad again and have had
absolutely no problems. I have total control. In fact, peeing now is much better
than it was. Prior to the surgery I would stand and have to wait to get a slow
stream going. Now, it's just right there and strong, kind of like it was 30 years
ago. Nice.
I
am now about 10 days post surgery. I feel very good, but yesterday I had another
incident where, when I went to pee, I had a few drops of blood come out. Again,
that was an isolated incindent (and I'm told expected) and has not happened again.
Generally speaking, I feel very good. I probably feel better than I should because
I want to start doing things almost forgetting I just had major surgery 10 days
ago. So, I am forcing myself to relax and take it easy.
I
am anxious to get going in the bedroom. Physically not much there yet, but definitely
slight movement. Doctor said anytime from 4 weeks to 18 months. Will start taking
Viagara next week. This is actually part of the regimen. Apparently, in this case
if you don't use it, you literally lose it. I am confident this will return also.
I
am so thrilled with the expert work of my doctor Mark Kawachi at the City of Hope,
along with his truly dedicated staff. Not only, are they very technically competent,
but all very nice (which is what ultimately is important because I have no plans
to socialize).
Today
is 21 days post surgery. I am healing very well.
As
I mentioned earlier I never had a problem with continence. I wore a pad for the
drive home after surgery, but didn't need it. And, have never worn one since,
with no problems. Totally continent.
Now,
the bedroom was the next concern. I had the desire and feeling immediately after
catheter removal, but was not able to get an erection. Doctor had prescribed Viagra
(I have never taken it before). I took 50 mg last Tuesday and again Thursday,
was able to have a slight erection and did orgasm. It was not very intense and
no ejaculate.
Then
started taking 100mg/day for this past Sunday and Monday. Surprise, was able to
have an erection good enought for intercourse. And, this morning, for the first
time since surgery, woke up with an erection.
I
am planning to continue using the remaining Viagra pills that I have. When they
are gone, I will see how things are working.
I
am extremely pleased with the bedroom progress. It has only been 3 weeks since
the surgery.
One
thing I did notice taking the Viagra was that under florescent lights I saw a
blusish haze. Apparantly, this is one of the possible side effects. I didn't worry
about it and it was gone the next morning when I awoke.
I
have an appointment Monday, 3/27/06 for the one month checkup. Hopefully, everything
continues to go well.
Well,
I went to my 3/27/06 one month checkup (actually 5 weeks) which consisted of a
PSA test and the doctor asking me how I am doing.
I
am very happy to say that my PSA result was <0.1 UNDETECTABLE.
Researching
this disease I have learned that diet is considered, by some, a form of treatment.
All of the books I read agree, more or less, that you are what you eat. And, if
you eat "healthy" you will be healthier because of a stronger immune system.
Well,
when I was first diagnosed I elected a diet following the primary suggestions
of these books. I now eat no butter, mayonaise, red meat or processed foods of
any kind. And, have given up alcohol. My diet consists of fruits, vegetables,
multi grain breads, beans etc...and water and natural fruit juices for drinks.
Smoothies consisting of strawberries and bananas for dessert.
I
have found that I am not wanting for any of the old foods. Now, this is probably
because I have a wife that loves to cook. And, she spends a great deal of time
preparing these foods in a way that makes them very tasty.
How
long will I continue eating this way? I don't know but currently have no desire
to change. I feel great and am happy with my weight. Also, my wife is like a policewoman
monitoring whst I eat.
NOW,
HERE IS THE KICKER............................
I
have for a long time taken my blood pressure upon awakening and going to sleep.
For the longest time, it has been approximately 135-145/75-80. Now when I take
it, for example, this morning it was 113/62. And, this measurement has been consistent
over the last 6 weeks, or so. I attribute this remarkable decrease to my new diet.
When I see this, it actually gives me incentive to continue.
Can't wait to get my cholestrol reading, to see how this has changed.
All
in all, I would say so far, so good.
Will
post later on the bedroom activity.
Been
a few months since I last visited. Recently, had my 6 month PSA and finger test.
PSA undetectable and all else well. Doctor said see you in 6 months.
Still
following my lifestyle decision of using diet (not for weight control but to boost
the immune system) about 98% of the time. In addition to the drop in blood pressure,
as mentioned above, I did get the results of my cholesterol test. Cholesterol
dropped from 200 to 150....and, good cholesterol went up and the bad went down.
Over
the last several months I have had a lot of time in the bedroom.
It's
not (yet??) the same as it used to be. Thank goodness for Viagra. I find that
it really works. It does take the spontaneity out of it, however. Have to take
the pill 1 to 4 hours beforehand. Additionally, some amount of manual manipulation
is required for erection. Sometimes, it goes limp and gets frustrating...othertimes
great. Interesting though, sometimes, if every goes right, stays harder and longer
than I can ever remember happening.
Another
thing I've noticed, sometimes, is that during intercourse I get a pain in the
side of the penis about 1-1 1/2 inches from the tip. It almost feels as if the
'inside' doesn't want to stretch as much as the 'outside'.
Otherwise,
all else is good and will check back periodically.
Just
had my 1 year PSA and finger test.
Happy
to report PSA undetectable and all else fine. My urologist made an interesting
comment to me that some of you using watching waiting may want to consider.
I
had an in depth discussion with my urologist concerning my pathology results from
last year. One statement on the report bothered me. It said "closest soft tissue
margin within .02cm". I said that seems pretty close to the edge. He responded
"we caught it just in time". .02 cm is approx 1/100 of an inch. Very close.
My
thought was what if I had waited? Would a year later have been too late? He also
mentioned that he was no longer doing the radical method with 8 inch scar...rather,
he is now referring all his patients, who want surgery, to City of Hope for DaVinci
laprascopic method.
After
my exam, which included questions about how am I doing...continence, bedroom activity
etc....he commented in a low voice, almost as if just talking to himself, as he
was leaving the exam room and said "Boy that guy is good". He was referring to
my surgeon and the great job he did on me.
I
am totally continent, have been since day one. As I reflect back over the past
year, there were some disappointments in the bedroom initially and for maybe 6
or 8 months. However, in the last couple months really no disappoinment to speak
of.
I
have been taking Viagara, which definitely helps me with virtually no side effects.
However, on a couple of occasions I was caught off guard with the wife, and everything
went well. Erection was firm and lasting.
Also,
mentioned this to the urologist. His comment was "viagara works better for most
men over 50 years old." I continue with my lifestyle regarding diet and exercise.
I am not fanatical about it today (as I was initially), but have come to the following
decisions.
WHEN AT HOME, 98% of the time I eat what everyone agrees are the good foods for
this disease...fruits, vegetables, whole grains, beans etc.... I drink a lot of
water, pomagranite juice and other fruit juices. I do have a glass or 2 of wine
several times a week.
WHEN OUT OF THE HOUSE, I am more relaxed about what I eat and drink. I am still
pretty good but might have some red meat and martinis or maybe even a hamburger,
if I choose.
Also, I try to exercise. Usually 1/2 hour on the treadmill when I can. I am probably
averaging 4 times a week doing this.
I
am now very happy with the course of treatment I chose and lifestyle decisions
I have made. I do think about this disease every day, probably most of us do.
The time of that great stress and making decisions on what treatment, and then
following through with the treatment, worrying about family seem very distant,
but vivid.
I
also feel that prostate cancer has positively impacted my life. I am taking better
care of myself and my medical tests have reflected that (lower chloesterol, lower
blood pressure).
I
again want to thank everyone here who has posted their story. I found this to
be a great comfort during those stressful times mostly because I didn't feel alone.
If I can ever be of help to anyone please don't hesitiate to email me.
Will
check in again after next PSA test in about 6 months.
Had
my summer check-up and results were great.
PSA undetectable and passed
the finger test.
There was an additional test. A sonagram where the purpose
was to check that the bladder was emptying adequately. The doctor said that sometimes
scar tissue develops after surgery, and, even though I may not know my bladder
is not emptying, the machine can tell. I passed.
Bedroom activity. A very
common concern and here is my take so far.
It is not like it used to be.
It could be that I am 1 ½ years older. However, I see this as a result of this
surgery. Not saying it is bad, just different. Fewer nocturnal erections and manual
manipulation necessary for erection. Thoughts alone don't work like they used
to.
I have found that I am dependant, maybe psychologically, on Viagra.
This drug works very well for me. As a result, if there is an inkling that tonight
may be a night, I will take a pill.
After 18 months using Viagra here
is what I have found.
Firstly, in the beginning give it a chance. Some
guys expect it to work the first or second time and it doesn't. This is what I
found. However, because it was prescribed for me , I continued to follow the doctor's
orders. After the first week it really started to work and it works great.
My
original prescription was 50 mg a day for 9 months. Insurance covered eight 100
mg pills a month. So, I cut the 100 mg pills in half and that got me 16 halves
per month (50 mg each). Did this for 9 months per doctor's orders. There is a
study that says, after surgery, guys who do this have a 700% better chance of
potency recovery than guys who do not.
I then started experimenting with
25 mg. I bought a pill cutter on e-Bay that works great. I cut a 100 mg pill into
four pieces. Interestingly, I found that the 25 mg works just as well as a 100
mg pill.
The drug company says take it 1 to 4 hours before you expect
to have sex. I find that you can take it up to 8 hours before and it still is
effective.
Also, if the moment catches me by surprise, I take the 25mg
pill and chew it, this seems to allow the body to absorb it faster.
One
last comment, I read a study that indicated taking Viagra may reduce the incidence
of atherosclerosis resulting in reduced risk of heart attack and stroke!!! Nice
side benefit.
Had
my winter checkup in January, PSA undetectable and passed finger test. Waiting
for that PSA result is still somewhat stressful. Although I feel the result will
be fine, you never know.
So,
the medical tests say all is good.
Honestly,
most of us guys think about sex a lot. However, when a prostate cancer diagnosis
hits you, you think about it a whole lot more. Because, the cure to the disease
threatens that activity. My experience has been very positive. Sex is still wonderful
and all the equipment is functioning very well.
I
have been cutting my 100mg Viagara pills into 4 sections, about 25 mg. I told
my doctor I have been taking 25 mg a day, every day. Just wanted confirmation
that this was ok. He said, "no problem, in fact it is a great way to start
the day". He also added that some studies suggest there may be other medical
benefits by doing this.
Doctor
said see you in 6 months.
Had
my July 2008 and January 2009 PSA and finger tests. All went well. PSA is still
undetectable.
I
continue to appreciate my good fortune in that I appear to be cancer free and
experience no continence or potency problems. I know this can change at any time,
but continue to have a positive outlook.
It
is still, and guess always will be, somewhat stressful everytime I take the PSA
blood test. Also, whenever I feel a pain somewhere in the region.... back, leg
etc... I tend to immediately think of the cancer. Other than those short stressed
periods, I truly appreciate life otherwise and am very happy with my treatment
decisions. I realize that the outcome could have been much different with a different
decision OR different physician.
Till
next time, GOOD LUCK to all with your decisions.
Robert's
e-mail is: bobsmycal@aol.com
