Rob
Simon
and
Gayle live in Missouri,
USA. Rob
was 48 when he was diagnosed on July 15 2005. His initial PSA was 0.80 ng/ml,
his Gleason Score was 6 and he was staged T2a. At present he is undecided as to
his treatment choice but is leaning towards surgery. Here is his story:
My brother Ron, to whom I was very close, died of prostate cancer just 2 years
ago in August 2003. He was 62, and his cancer was diagnosed in an advanced state,
having already metastasized to his bones at the time of diagnosis (at age 60)
in August 2001. The reason for the advanced state was because he hadn’t had a
physical in many years, which frankly was not very prudent for a man over the
age of 50. He knew this, and chastised himself about it constantly during the
last two years of his life.
He
made me promise to get annual physicals, since, as you all know, a man’s likelihood
of developing prostate cancer increases significantly if your father or brother
had the disease (my father did not, to our knowledge; he died of a stroke at age
64, and my other brother, Bill, is alive and healthy at age 67).
I
had my first physical within 6 months of Ron’s diagnosis, and have had one annually
ever since. It was during my annual physical this past March (2005) that my doctor
noticed a small nodule on my prostate. My PSA was only 0.8 ng/ml, but due to the
presence of the nodule, I was directed to an urologist for further checking, and
he recommended that I have a biopsy, which I did in early May (by the way, my
urologist is apparently very good at this based on other accounts I have read
– I had no pain and minimal discomfort during the actual procedure, and minimal
after-effects). The results came back inconclusive; 11 of 12 mapped tissue samples
were normal, however there was one tissue sample (from the area where the nodule
is) that was considered “suspicious” and warranted another biopsy within the next
few months (the doc advised that it be done no sooner than 6 weeks later), at
which time they would focus on the area of suspicion.
I
had this done 9 weeks later in early July, at which time they took 5 more samples
from the suspicious area only, and I received the unfortunate results a week later
– T2a, GG 6 (3+3), PCa in less than 3% of the tissue, but fortunately fully contained
(which was expected given the small size and low PSA).
I
now have some decisions to make regarding treatment, and I intend to get a second
and maybe even a third opinion before taking action, including a second pathological
opinion on the biopsy considering the small amount of cancerous tissue. Assuming
pathological agreement, I’m pretty certain that I will have treatment of some
kind before the end of 2005, probably in October or November. My brother’s experience
and the fact that the tumor is palpable, albeit small and with low PSA, tells
me that watchful waiting may be risky (I’m open to opinions). My type A personality
also would make WW difficult.
You
won’t be at all surprised that my uro has suggested RP. He does robotic laparoscopic,
which so far I like compared to open or even to standard laparoscopic, if surgery
is my chosen route. Fortunately, I had already started researching prior to diagnosis,
and had alread y learned much previously during my brother’s ordeal, so I will
consider all options, but at my age it seems that surgery or radiation therapy
of some type (currently leaning toward IMRT in this category, but have yet to
see a radiation oncologist, so far from my final opinion) are the best routes
to consider (again, open to opinion). My wife Gayle has been very supportive emotionally,
has helped with the research, and will be by my side helping me with all these
decisions, and I am extremely lucky and thankful that we have such a close relationship.
I can’t imagine doing it without her help.
By the way, I’m in excellent
physical shape, which should work to my advantage (I weigh the same now - 170
lbs – as I did when I was in high school) with no other physical aliments other
than the occasional sore muscles from overexertion. I have always exercised regularly
and watched my diet, but I’ve probably eaten more red meat than I should have
over the years and I’ve definitely drunk more beer and wine than I should have
over my lifetime, but any truly abusive alcohol use was when I was in college
and for a few years thereafter; back when I was “invincible” (I’m sure many of
you can relate to those days).
I will add more once I have chosen my
treatment. I will be soliciting advice from this and other support groups via
e-mail throughout my decision process, and greatly appreciate any and all input.
It's
been three months since I wrote my initial story, and it seems like much longer.
I have researched every option available to me, and am confident in my decision.
I
originally indicated that I was leaning toward surgery. That was because it had
been less than 2 weeks since my diagnosis, and I was leaning on my urologists
words that surgery is best for younger men. For some it may be, and I certainly
do not disparage the choice of surgery for those who are comfortable with it,
but after researching it thoroughly, I frankly found that surgery scares me too
much to be comfortable with it, regardless of the skill of the surgeon. I was
not comfortable with watchful waiting (e.g. active surveillance) due to the fact
that my brother died from advanced PCa, so I thoroughly evaluated all other options.
I
strongly considered seed implants and IMRT, but in my opinion neither offer a
better chance of success than proton therapy, and proton therapy appears to have
much fewer side effects. I also looked at HIFU, but since it is not FDA approved
and I cannot afford to pay for the procedure out of pocket (including the cost
to travel outside the US), I chose proton therapy. I will be going to Loma Linda
University medical Center in Southern California to begin treatments on Oct 24.
I
had my orientation and planning session on Oct 6, and I am very impressed with
the skill and caring of the nurses and doctors. The testimonials from former proton
patients helped also - I spoke to 10 men who had the treatment, and corresponded
via e-mail with at least 10 more, and all had nothing but glowing things to say
about the treatment. I will have a total of 44 treatments in just over 2 months
(they have recently increased the number of treatments from 40 to 44), so I should
be finished just after Christmas if all goes according to plan. Fortunately, my
wife will be able to join me in California, and I am very grateful that she will
be with me. We found a place that will accommodate our two dogs, so they will
be with us also. My company has been very accommodating also, in that they are
allowing me to work part time on a remote basis. The great thing about proton
therapy is that you don't feel bad during the treatments (or after), so working
part of the time is very feasible.
For
any men newly diagnosed and who have the flexibility to temporarily relocate if
necessary, I strongly urge you to check out Loma Linda and proton therapy. I will
update my story again once I have completed my treatments.
I
am writing this on January 18, 2006. I completed my proton radiation treatments
at Loma Linda University Medical Center on December 30, 2005. I cannot emphasize
enough how happy I am that I made this choice. My radiation oncologist was Dr.
Carl Rossi, and he and his nurse Sharon Hoyle are very professional and caring
people, as are the entire staff in the radiation medicine unit at LLUMC. I began
my treatments the last week in October, and had a total of 45 treatments. They
are administered once per day, 5 days a week, except on holidays. Most men have
44 treatments, but I needed to have one extra due to the density of my pelvic
bone (I don't understand the physics behind that - I trusted my doctor on that
decision). The total amount of radiation was the same as for men who receive 44
treatments, which I believe is 79.2 gy (it might be 79.6 - I don't have the sheet
in front of me, but it's one or the other). At no time during my treatments did
I feel bad. I worked out vigorously at LLU's workout facility (the Drayson Center
- free to all patients) at least 3 times each week, and most weeks 4 times, I
went on long walks daily with Gayle and the dogs, and I played 15 rounds of golf
while I was there. Not a bad way to spend time during one's cancer treatments.
Plus, as I mentioned in my previous update, I was able to work on a remote basis,
putting in roughly 20 hours each week.
The only side effects I experienced
during treatment was some burning during urination and during ejaculation. In
both cases, it was lessened significantly by simply taking two Aleve per day.
I also had a little more frequency of urination, but I attribute that more to
the fact that I was drinking a lot more water. The burning is now completely gone
less than three weeks post treatment. I have suffered no potency issues at all.
Everything still works great in that regard, although there is very little fluid
upon orgasm, and that will become even less over time. After all, they are killing
the prostate!! I guess there is a chance of decreased potency over time. We'll
see what happens, but right now everything's great, so I need to take advantage
of it while I can!
Apparently, some men also experience increased fatigue
from the treatment, but I had none. Dr. Rossi said that the level of activity
during treatment helps limit fatigue, and I think I'm proof of that. My age probably
helps in that respect, too - I was the youngest one there during my 9 weeks of
treatment. However, age didn't seem to be a factor for many of my fellow patients
- there were lots of men 20 years or more older than me who were also working
out 3-4 (or more) days per week, and many of them were also playing golf regularly.
The
support groups at LLUMC really make it an enjoyable experience. I have a difficult
time imagining any other place with the level of care they offer. The treatments
themselves are certainly not pleasant (read
details), but they are by no means unbearable, and the techs do everything
they can to make them as easy as possible. The only inconvenience is when the
"machine" goes down (i.e. the accelerator or the computer), but that
only happened about 8 times in ten weeks, and in most instances it was less than
a two hour delay. Occasionally they are down for an entire day, which happened
to me three times. That simply means that you don't get treated that day, come
back the next day, and add a day to your stay.
My first post-treatment
checkup, which will include PSA and DRE, will be 4 months after my final treatment,
so sometime at the beginning of May. I will update again at that time. Until then,
I'm not going to worry about cancer and get on with my life. I am confident that
I am cured, and I feel very fortunate. I know there are no guarantees, but my
statistical chances are very good, and positive mental attitude is as important
as anything. If anyone wants to talk to me in more detail about my experience
at Loma Linda, please do not hesitate to send me an e-mail, and we can exchange
numbers. Best of luck to all men out there who are dancing with the bear.
One
last comment - my treatments were fully covered by my insurance (subject to deductible
and co-pay, of course), with no hassle whatsoever.
I
am writing this on May 16, 2006. I am just over 4 months post-treatment, and I
just received the results of my first post-treatment PSA test. It is headed in
the right direction, currently at 0.50 ng/ml. It was 0.80 ng/ml at diagnosis,
so it is down by roughly 40%. We were told to expect a reduction between 30% and
50% at first test, but not to expect it to be as low as it will ultimately be.
Dr. Rossi (my radiation oncologist at Loma Linda) advised that it sometimes takes
as long as three years for the PSA to reach its nadir (i.e. low point) and that
for most men it then stays at that point for many, many years (hopefully forever).
In the interim, some of the earlier tests may even show a slight increase over
the previous test. In most cases, this is a "PSA bounce", and not of
concern. If it rises for three consecutive tests, then it may mean the cancer
has returned. With radiation therapy of any kind, there is no assurance that PSA
will become undetectable or register as <0.10 ng/ml, but as long as it remains
low and steady over time, one should be confident about the long term. There are
many former proton patients whose PSA leveled off around my current level of 0.50
ng/ml, so I remain confident in my long term prognosis.
As
respects my general health otherwise, I'm feeling great. No urinary issues at
all. Potency remains strong, although admittedly my stamina is not the same. But
the result still feels good, and I've got enough stamina to keep my wife happy
(that's what she says, anyway - maybe she's just being kind, but I think she's
being truthful). I am religiously taking my supplements of vitamin E, Omega 3
fish oil, and selenium, and I continue to try to eat right. We are eating much
less red meat, and a lot more tomato based foods. Work is stressful once again,
but so what else is new. My reaction to work stress is a lot different than it
used to be, though - an experience with prostate cancer really puts things in
perspective.
My
next PSA test is in October. Until then, I consider myself cancer free.
This
update is overdue. I have had many changes in my life since my last update, all
positive. I'll keep this succinct.
In
October 2006 I had my second post-treatment PSA test, and it was 0.6 ng/ml, up
from 0.5 ng/ml in April. I had been told that a slight bounce was possible early
on, but after informing my doctor and nurse at Loma Linda about the increase,
they suggested that I have another test in about three months time. So, I waited
until the end of January and had another PSA test, and am pleased to report that
it is now 0.3 ng/ml. That was great news to start the New Year.
As
for the rest of the "issues" associated with prostate cancer treatment,
I am also pleased to say that I have no continence issues whatsoever, I never
experienced any rectal bleeding as some proton patients do. My potency is still
good, although admittedly it's not the same as it was pre-treatment, but I knew
that would be the case.
The
biggest change in our life is that in May of 2006 I accepted a job with a new
firm and my wife and I (and our dogs) have relocated to Bermuda! From about as
far away from the ocean as to can get in the US (St. Louis) to the middle of it.
Its a great opportunity for me, although my work schedule is extremely busy. I
try to minimize the stress. As I've said in previous updates, my view of work
issues is a lot different than it was before I was diagnosed with cancer. We love
living here, and will likely be here between 4 and 6 years. After that, who knows!
I just consider myself extremely fortunate to have caught my cancer early and
treated it, thereby allowing us to take advantage of this great opportunity. '
All
the best to all of you, wherever you may be on the road of battling this disease.
The war is winnable!
It's
been one year since my last update. I am pleased to report that my most recent
PSA test at the end of January 2008 was 0.3 ng/ml, which is exactly what it was
in January 2007.
I
did have a test in July 2007 as well, at which time it was 0.5 ng/ml. My doctors
at Loma Linda advised me not to be concerned about the slight up tick in July,
because it is common for their to be a slight PSA bounce within the first couple
of years after radiation treatment. I will admit that I was nevertheless a little
concerned going into my January 2008 test, because I certainly didn't want to
see it increase two consecutive tests. Needless to say, the 0.3 result put my
mind at ease.
Everything
else is fine. Continence is perfect, no other internal issues, and potency remains
the same as it was a year ago. Main issue in that respect is stamina. "Getting
there" is not a problem, and the finish remains enjoyable!!
I
encourage anyone who wants more information about my experience to contact me.
I will update again in January 09.
I
can't believe it's been another 13 months since my last update [Rob
tried to update as promised, but due to ISP problems, his update was lonly received
in May] , so I am now 39 months post treatment.
I
am very pleased to report that my most recent PSA test at the end of February
2008 was 0.3 ng/ml, which is the same as it was in August 2008 and January 2008,
so three consecutive readings at the same level. That leads me to believe I've
reached my nadir, and I'm happy with that. Proton radiation does not necessarily
lead to an undetectable PSA. There are many former proton patients living happy,
healthy lives with PSAs higher than mine was at diagnosis (0.8).
Everything
else is still fine - better than fine! Continence remains perfect, no other internal
issues, and potency has, if anything, gotten better. I know that makes no sense,
and perhaps it's just mental, but any "reluctance" that existed previously has
essentially disappeared over the course of the past year. Stamina is still not
what it was pre-treatment, and I don't expect it to be. But quite honestly, I
went into this expecting some level of ED after three years, and that hasn't happened.
I'm certainly not complaining.
I
also had my first ever colonoscopy last spring, and the report from that was "all
clear, come back for another in 10 years". The doctor knew I had radiation therapy,
but he didn't know it was proton therapy. He told me that I had the least amount
of radiation proctitus that he had ever seen in a man who had radiation therapy
for prostate cancer. I then explained that I had proton therapy, and he said it
shouldn't make a difference. I disagree, but I didn't tell him that.
I
encourage anyone who wants more information about my experience to contact me.
I will update again in early 2010.
Rob's
e-mail address is rsimon@northrock.bm
