Jim
P lives in Pennsylvania, USA. He was 35 when he was diagnosed on May 28, 2006.
His initial PSA was 6.8 ng/ml, his Gleason Score was 9 and although he does not
state what he was staged it seems that clinically his staging would have been
T1c. His choice of treatment was Surgery / Immuno therapy (IAT). Here is his story.
THERE
WAS NO RESPONSE TO A REMINDER FOR
AN UPDATE IN SEPTEMBER 2009 .
On
May 28, 2006 I heard the words that would change my life forever. "You have prostate
cancer". My first thought was that they had the wrong guy and there is no way
that this is correct. You see, I was a 35-year-old white guy in pretty good shape.
I am way too young to have prostate cancer. That is an old man's disease. My second
thought was what and how am I going to tell my wife and family.
My symptoms
started in 2000. I went to my family doctor and described what I was feeling.
I told her that I had a stinging/burning feeling whenever I finished peeing. Also,
my flow had cut down and I didn't feel like I was empty. Her first thought was
that I had a STD (Sexually Transmitted Disease) and she was going to run tests.
I knew that that was not the problem, however she insisted that it was. After
the tests were run they came back negative for gonorrheae and Chlamydia. At this
point I was sent to a local urologist for further examinations. I saw the urologist
and after seeing that it was not a STD he told me that it was probably something
in my diet that was making my urine sting and that I should change my diet. That
is what I did and nothing changed.
In 2003 the problem seemed to worsen.
I decided to go back to the urologist to get checked out. Once again STD tests
were administered and once again they came back negative. The urologist again
told me that he believed that it was something in my diet and to examine what
I ate and to see if there was any effect. I again tried this and there was no
change.
In the following months things seemed to worsen a little. The
symptoms remained the same but now there was a new problem. Every once and a while
I was having trouble getting and maintaining an erection. It only happened a few
times but I decided to go back to the urologist. At this point he performed a
digital rectal exam and said that everything felt normal. He then told me that
there was nothing wrong with me and it was all in my head. Unfortunately, I listened
to him.
For the next couple of years I just lived with the symptoms just
thinking that this is normal and that it must be that I am getting older. I was
listening to the "Bubba The Love Sponge Show" one day and they had a segment where
Bubba was going to have a prostate exam done live on the radio due to the fact
that he had just turned forty and that is the time to start checking the prostate.
Dr. Mark, the show's urologist described some of the symptoms of prostate cancer
and they seemed to be in line with my symptoms. I didn't think much of it because
of my age but it did seem a little strange that what I was feeling is what was
being described. That was the first time that it ever crossed my mind that it
could be a prostate problem.
In the mean time a friend of mine had become
a doctor. On a routine check up in March of 2006 I asked him if he had any samples
of Viagra. When he asked me why I needed it I explained my symptoms and what was
going on. I told him that I was having trouble urinating and at times achieving
an erection. I told him that a urologist said that there was nothing wrong. He
disagreed. He also sent me for a STD check, which came back negative. Fortunately
for me he did not stop there. He gave me some antibiotics because he believed
that I might have an infection either in my urinary tract or my prostate. It helped
a little but I was still having problems. At this point he ordered a PSA test.
A PSA test tells a doctor if there is anything going on in the prostate. When
the results came back it was a 6.9 ng/ml. A normal score for someone my age is
between a 0.0 and a 4.0 ng/ml. At this point my friend sent me to see a different
urologist.
The first thoughts were that I had an enlarged prostate. Due
to this I was put on an antibiotic and a medication to help with the urination
because by now it was only a trickle and I was up 4-5 times per night. After a
month I went back to the urologist and told him that nothing had changed. He told
me that to be on the safe side he was going to do a biopsy of my prostate but
he did not believe that he would find anything due to the fact that my prostate
felt normal to the touch. This is where it all goes down hill.
The biopsy
went as normal. Luckily I was put out so I did not feel anything. When a prostate
biopsy is performed a doctor goes in through the rectum and snips sections of
the prostate for testing. I felt a little discomfort after but nothing too bad.
The next day I woke up, went to the gym, and got my day started as normal. Around
10:00am I began to get the chills and began shaking. I went home and called my
wife. She called the doctor and was instructed to take me to the emergency room.
Upon arrival I was running a temperature of 102F. I was immediately given IV antibiotics.
Shortly after the urologist came in and told me that I had developed an e coli
infection in the blood stream due to the biopsy.
On the forth day of my
hospital stay the results of my biopsy came in. It was the Sunday of Memorial
Day Weekend 2006. My urologist came into my room and told me that he had been
walking the hospital wing for an hour trying to figure a way to break the news.
"You have prostate cancer and it is bad". He told me that my Gleason score was
a 9. A Gleason score is how a pathologist determines how radical a prostate cancer
is. The scores range from 2 to 10 with 10 being the most radical. My wife was
not in the room when he broke the news but fortunately she called while he was
there and he explained everything to her.
"You need to have your prostate
removed". At this point I don't even know what the prostate does and if I needed
it to live. The prostate is a gland that sits just below the bladder. It is responsible
for making semen (the liquid that is released during a male ejaculation). I was
told that once the prostate is removed I would still be able to have an orgasm
but nothing would shoot out. Also, I may have trouble achieving an erection due
to the fact that the nerve bundles (two of them) that control erectile function
run along either side of the prostate. Before we could get too deep into this
discussion we needed to find out whether or not the cancer had spread outside
of the prostate.
In about an hour I was rolled down to the CAT scan lab
where a bone scan was preformed. With prostate cancer the cancer will usually
be confined to the prostate due to the fact the prostate is a very encapsulated
gland. If it was to spread the first place it will usually go is to the lymph
nodes and then into the bone. I was lucky, no bone involvement and the only place
that it could be seen was in the prostate.
After seven days in the hospital
I was sent home. It was explained to me that I needed to have my prostate removed
and was also told that there may be sexual side effects due to the surgery. I
decided to go to the best and made an appointment at Johns Hopkins with Dr Alan
Partin. It was explained again that there may be sexual side effects but due to
the fact that I was young I should bounce back. I reluctantly decided to have
the surgery and scheduled it for July 26, 2006. It was now June 6th of 2006 and
July 26th seemed a thousand years away.
Three weeks after being released
from the hospital after my bout with e coli I was celebrating Fathers day with
the thought of major surgery in the back of my mind. During dinner I went to take
a leak. I now know what it feels like to pee fishhooks. The infection that we
thought was gone had showed back up again as a urinary tract infection. I was
admitted back to the hospital the next day for five days. Keep in mind; this is
all before surgery took place.
On the morning of July 25, 2006 my wife
and myself had a meeting with the surgeon at Johns Hopkins. He discussed with
us what was going to happen during the surgery, recovery time, etc. During the
discussion he mentioned that he was going to remove my left nerve bundle. As I
explained before, there are two nerve bundles that control erectile function and
he was going to remove one of them. Needless to say we argued about this. However,
in the end, he did remove it.
Recovery went better then expected. I was
released from the hospital the next day. The most difficult part of the recovery
was the catheter. Ten days of looking at a hose coming out of you is a little
hard to take. After the catheter was removed it was an up hill battle to regain
bladder control. I had to re-teach myself how to hold my pee. That was a two and
a half month ordeal. You know that it is bad when you are 36 and you have to put
on a Depends before you go to work. I have, for the most part, regained bladder
control. However, a sneeze or heavy cough could cause a spurt or two.
Upon leaving the hospital the doctor wrote me two prescriptions, both for Viagra.
I was instructed to take 25 mils once a day and to ramp up to 100 mils before
having sex. I was told to start to try to achieve an erection after the catheter
came out. Five months after surgery and had nothing. I should restate that, I
could achieve an erection adequate for penetration which is actually no more then
a "chubby". To be clear, this is not sex!! I went through a number of ED treatments
but with little success. I eventually had implant surgery. I believe that the
doctors really sugar coated the sexual side effects part of the procedure. Had
I then what I know now, my decision to have the surgery done may have changed.
Unfortunately the news got worse. About seven days after surgery the urologist
from Johns Hopkins called and informed me that the cancer had in fact spread beyond
the prostate. During surgery he also removed eleven lymph nodes, one of which
showed positive for cancer. This meant that the cancer was now in the lymphatic
system. I was instructed to see the oncologist at Johns Hopkins. The oncologist
told me to take a watch and wait approach. He wanted me to watch my PSA levels
to see if there was a steady climb in the numbers.
Over the next couple
of months I went to some of the top cancer centers in the US and got different
opinions from most of them. The main treatment for prostate cancer is hormone
treatment and radiation treatment. Basically hormone treatment is chemical castration.
There are a lot of other side effects that go along with it. The radiation treatment
would entail "painting" the entire pelvic region with radiation. Side effects
to this treatment would include losing bladder control, losing all sexual function,
and possibly burning part of my colon. Where do I sign up????
In the mean
time I heard of a place in the Bahamas that does alternative cancer treatment
by boosting the immune system to recognize the cancer cells and destroy them with
little or no side effects. The more I researched this the better it looked. The
first visit requires a two-month stay and subsequent visits thereafter. I decided
to go for the two months and give it a try. Upon arrival there was about forty
people at the clinic. The biggest surprise was that I could not tell who had cancer
and who did not. I spent the two months and met a lot of different people with
a lot of different cancers. I returned home on December 23, 2006 feeling good.
I have a lot of hope that this treatment will work. If it does not I will have
to look else where because I have already decided to for go hormones and radiation
treatment due to the nasty side effects and the fact that these treatments are
not a cure.
Today I feel good and look good. The doctors told me that
with a cancer as aggressive as this one is I have between 8 and 12 years before
the cancer eventually spreads through out my body. At the clinic in the Bahamas
I met a group of men who have been living with this for as long as 23 years, feel
great, and have clean CAT scans.
If I could give any advice it would
be to have your prostate checked if any of the symptoms that I have described
exist. I would also demand a PSA test from your doctor even if he tells you that
you are too young. Chances are that it would be either a STD or infection but
why take the chance. Had the doctor ordered a PSA test six years ago things in
my life would probably of been a little difficult but manageable.
