Dave: Prostate cancer survivor
My name's Dave, I'm 49 years old, and I live in Sacramento, California. I've
been married 27 years, I have a son that just started college, and a daughter
that just started high school. My life changed about six years ago when I went
in for an annual prostate cancer screening in the fall of 1993, and got a
positive diagnosis for prostate cancer. I started doing annual screenings the
year before, because my father died of prostate cancer in February of 1980. He
was 57 years old. A very young man. And I knew that there was a family
possibility of prostate cancer that made it much more imperative to get in for
screening, starting at age 40. So I did that, and again, I had a diagnosis of
prostate cancer in the fall of 1993, which I guess would actually be about
seven years ago. This was a very interesting screening, because the PSA didn't
catch this prostate cancer. My PSA never got above 0.8. It was caught during a
digital exam. The doctor found an irregularity. I was referred to a urologist,
who did an ultra sound and a nine-needle-stick biopsy. And they found small
traces of cancer in 2 of those needle biopsies, and actually it was such a
delicate reading that it was actually ready by three different labs before
they finally came back with Gleason's ranging from 2+2 to 3+3. But the fact
was, I had it, and I needed to figure out what to do about it.
Family history
I knew what it could do. I'd seen the devastating effects in my own
father's life. We're dealing with metastatic prostate cancer and I set out to
find out what information was available about prostate cancer. My father, in
the late seventies, found that there was very little information to be had for
consumer about prostate cancer, most of it was medical, in fact he wrote a
paper in order to give other people an opportunity to kind of see what he
knew. I found that paper and read it, and started contacting various agencies.
And I will say that 7 years ago, American Cancer Society had actually very
little useful information on prostate cancer. I found most of my information
from other sources. However, I'm very pleased to say that today, ACS is one of
the leading providers of very good information. So there's been a lot of
change in that seven years, and for the better. And I should mention at this
point that I'm on the local board of ACS and so I'm very proud of that
change.
An informed decision
What I've found, though, was that there was more information available than
when my father started looking for information, but in the intervening seven
years, there are maybe five or ten times as much information, and good
information available, now. So what I found was information that talked about
staging, that talked about treatment options. And I went to my doctor, I went
to a second opinion and I actually went to a total of five second opinions,
discussing everything from surgery to radiation before I finally settled on
the treatment that I was going to use for myself, which was surgery. And this
is the actual surgery, it's called a "radical retropubic nerve-sparing
prostatectomy" and it's about as bad as it sounds. My doctor did something,
which I think every doctor should do, he hooked me up with one of his current
patients. He said, "why don't you talk to him he'll tell you what it's like. I
can tell you what I think it's like but he'll tell you what it's really like.
And I found out that you could go through it and then you'd live, and it would
be okay, and what to expect from the surgery. And I did that, January 14,
1994. I had my radical retropubic nerve-sparing prostatectomy, and had my
prostate removed.
 The really
good news now is that at age 49, I'm still cancer-free, just went in a couple
weeks ago for my annual checkup. I still have an undetectable PSA, I still
have an undetectable prostate. The thing I've learned about prostate cancer is
that sometimes it can be slow-growing enough that a five year survival isn't
considered a cure. It's ten or fifteen years before you start talking in terms
of a cure. But because it was caught so early, I'm very optimistic. And the
reason it was caught early is that I did take the trouble to go in for the
annual screenings, in spite of the fact that one of the doctors told me at the
time that I went for my first screening, "You know, you're way too young. You
really don't need to come back for ten years." And I'm really glad I didn't
take that advice. Now, he turned out to be one of my second opinions, and a
highly respected one. But it was just what he knew versus the reality of the
situation, and I think that people today realize that, yes, if you're in a
risk group African-American or familial history of prostate cancer, that you
really need to go in starting at age 40 to be checked.
The impact of treatment
After surgery, you know, that changes things. You go in feeling fine, then
come out with a surgical cut from your belly button on down, and that takes
really the muscles, altogether, about six months to heal. I was feeling a lot
better after one week, I was feeling pretty good after three weeks, I was back
to work after nine weeks. I would say three months was another plateau. There
were a lot of little plateaus. But over all, there was nothing that I couldn't
bear, there was no pain that I couldn't stand, it was all manageable, it was
all managed with painkillers and with care and advice. One thing you do have
is a pillow to hold against your stomach in case you sneeze, just to make sure
everything stays in. I had a catheter for 3 weeks afterwards that allowed the
urethra time to heal. And anyway, that's the story of my surgery.
Talk to someone who's been there
I think the interesting things that have come out of this experience for me
are that not only am I actively involved in the American Cancer Society, on
the board, and working with prostate control, but I've also been actively
involved in a local prostate cancer support group and talked to a lot of men
who've been in a similar situation, and I've been able to share my
experiences. I'm finding that a lot of men come back to the group, and even
though that is something for which you might take five or ten minutes out of
the day, is a lot of men come back and that's become the most important event
in their life up to that point, that somebody would take the time to talk to
them and tell them what happened. And that's one of the reasons why I wanted
to give my story here, to give other people a chance to have the benefit of my
experience. I have found that it's changed my life to this respect: I try to
take each day and look at it as a little more special than I used to, you kind
of take your days for granted unless you're facing a life-threatening disease
of some sort, and then I think you tend to rethink about what your priorities
are. Now after seven years, it's kind of easy to fall back into the rut, and I
admit that I do that, but I really try hard to take that step back as often as
I can, and look at life and look at the beautiful things in life. I think that
the one thing that really did more for me than anything else is my faith in
God and the fact that I knew that I had done my part and it was up to me to
rest in him to do his part. My family was a huge support, also, and my doctor
network and my friends at local foundations as well as at the prostate cancer
support group were also tremendously helpful. I think the advice that I would
give to other men facing a prostate cancer diagnosis is, honestly, get a hold
of somebody who's been there. Not only talk to your doctor, not only talk to a
second or third doctor until you find one that not only makes sense to you but
also somebody that you would trust with your life. Talk to people who've gone
through it, talk to either local support group or call American Cancer Society
and ask for a call or a visit and just a chance to kind of bounce your ideas
off somebody who's been there. There's nothing like having a chance to talk to
somebody who's been in the same boat that you are.
Then and now of side effects and treatment
I will now talk about side effects and the fact that there are some common
side effect with prostate cancer. And I want to point out some differences in
the way things are done now and the way things were done 20 years ago when my
dad was facing prostate cancer disease. Unfortunately, when he had surgery,
they found that it had spread so they had no choice but to close him up. They
sent him for radiation. The radiation techniques today are much more advanced
than they were 20 years ago. He had to go to Stanford University from Idaho in
order to get to a cyclotron. Today it's routine that most centers are using
three-beam conformal radiation. Radiation delivery is much better. Or hormonal
oblation, which is used for advanced cases of prostate cancer. The choices
then were very limited, they used a female hormone, distilbesterol, or they
did a surgical removal of the pituitary gland. Now, of course, this can be
taken care of with LHRH androgens. So that area's changed a lot. Side effects:
incontinence was a huge side effect then, since the early 1980's Dr. Walsh
surgery has been developed, and incontinence is not nearly the problem that it
used to be. Now I've not found it to be a problem. Impotence is the other
problem that can arise from the prostate cancer surgery or radiation, and I
believe in 1980 there really was no treatment for impotence or "ED, erectile
dysfunction". Nowadays there are any number of treatments, including vacuum
pump, injections, implants, and medication. Viagra, and others that are coming
down the pike. So the outlook is really much brighter for men who face a
diagnosis these days . Side effects that may occur also have treatments that
are available . And it's easy to think we are not making as much progress as
we should and it would always be great to make more, and to make it so that we
could treat the disease with genetic therapy or with a magic pill. That may,
in fact, come to pass through a lot of testing and a lot of trials. But the
fact is that treatment and diagnoses and outcomes are much better today than
they were, even 20 years ago, and I really appreciate that fact, having really
lived through both of those scenarios.
Final Advice
In conclusion, I think I would just say for a person who's facing this,
don't face it alone. Get your family involved, get anybody else involved that
you want to. There are a number of agencies that would love to help. American
Cancer Society is the first one I would call today.
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