Jeffrey
Rafsky and Karen live in Pennsylvania, USA. He was 54 when he was diagnosed on
November 8, 2005. His initial PSA was 0.50 ng/ml and his initial Gleason Score
was 3+3=6. Although he was staged T1a, it seems from his story that this might
have been staged T2a by some experts. The treatment he decided on was Expectant
Management. Here is his story:
I am a 54 year old Caucasian in excellent overall health. I was diagnosed with
Prostate Cancer on November 8th, 2005. My PSA was (is) 0.50 ng/ml and has been
0.50 ng/ml for every PSA test since I started having them 5 years ago. I have
a family history which includes a father and uncle with Prostate Ca diagnosed
in their 70's. Both are still alive (uncle 10 years post diagnosis; father 3 years
post diagnosis). I had a biopsy done after my annual physical DRE resulted in
my primary physician "feeling a nodule" which was confirmed in a subsequent DRE
by my urologist.
The
biopsy took 12 cores. During the biopsy the urologist told me that the "palpable
node" looked like calcified cells from chronic prostatits. I received a phone
call from my physician, post biopsy, telling me that 11 of the cores were fine,
but the twelfth looked abnormal and that they were going to stain the 12th for
a better read. The site of the 12th core had nothing to do with the "palpable
node" which was , in fact, calcified cells. The staining resulted in a diagnosis
of Prostate Ca. The 12th core had less than 5% volume of adenocarcinoma cells
and was in the transitional part of the gland. The Gleason score was 6 (3+3).
The Gleason has been confirmed at two major Cancer Centers.
I met with
urologists (some practicing surgeons, some not) and was pointed down the path
towards surgery. I was comfortable with my choice of surgeons (nationally recognized
name out of NYC) and the procedure (Robotic). I overcame the idea that I was somewhat
young to be dealing with this. What I couldn't overcome was the implications of
the 0.50 ng/ml PSA. I was unable to find anyone to speak with who presents with
as low a PSA, to hear their experience (decision as to treatment, result etc.).
I had nagging concern as to whether I was rushing to the surgery. While no one
has said that "watchful waiting" was an unacceptable course of conduct (with saturation
biopsies and regular PSA monitoring), everyone indicated that I was the perfect
candidate for surgery and that there was no guarantee that will be the case down
the line.
After scheduling the surgery I went on to meet with the Prostate
Group at the Kimmel Cancer Center at Jefferson Hospital in Philadelphia. I met
with a Radiologist, an Oncologist and a Urologist. Amazingly, none of them felt
strongly that I should have surgery. In fact the consensus was I was a good candidate
for Expectant Management. They all thought there was a chance that the cancer
was an incidental finding and that it might be years before I had to deal with
it, if ever. As long as I was vigilant in follow up PSA's (every three months),
DRE's (every six months) and biopsy's (every year), I could wait and see what
happens. I then communicated with Dr. Ballentine Carter at Johns Hopkins. He runs
the Expectant Management Program there and is considered a world class expert.
He said that I fit the parameters for the program subject to their review of my
pathology. That was all I needed to cancel the surgery.
I am comfortable
with my decision. The surgeon has reiterated his belief that surgery is the proper
course and I respect his input; but the idea that I have cancer doesn't overwhelm
me and I believe there is a chance that I will not need surgery any time soon
if ever. I will be vigilant in managing my condition. I'll keep the board posted
on my journey down this path.
I
am two PSA tests into my monitoring protocol. The first PSA test in January resulted
in a slightly elevated finding of .70 ng/ml. I was actually nervous about the
increase as my PSA never rose above .50 ng/ml during the five years it had been
monitored and I have always used the same lab for results. Both my primary doc
and my urologist thought the increase was insignificant by itself and told me
to wait for a pattern before reacting. Turns out they were right. I received the
results of my PSA test from last week and it is back to .50 ng/ml. I will continue
to have the test done every three months and see my urologist every six months
with a biopsy annually.
So
far so good. I'll keep you posted.
I
just had my quarterly blood test and exam and there is no change. My PSA remains
.50 ng/ml and the Urologist's comments after the DRE were that my prostate remains
remarkably unremarkable. I've scheduled a biopsy for the end of October (one year
since diagnosis). I remain confident in the course I have charted. Further updates
to follow.
I
just had my fourth PSA, fourth DRE and second biopsy since my diagnosis last year.
My PSA remains at 0.50 ng/ml, the DRE was normal and a 15 core biopsy (with 3
cores taken from the site of adenocarcinoma find in the first biopsy) found some
abnormal cells (PIN), but no adenocarcinoma. Needless to say I am thrilled. I
came so close to having surgery and only as a result of reading, researching and
listening to others did I make the decision to slow down and gain some perspective.
I participated in a clinical study in this biopsy which used a different contrast
agent to see if increased blood flow indicated spots which might be cancerous.
I'll be interested to see if the study is successful. The Nurse Administrater
said she hoped she never saw me again. I said I hoped I saw her every year (which
would mean that every annual biopsy gave me no reason to seek more aggressive
treatment). She also said that she believed that we were no more than 10 years
away from a more "friendly " treatment regimen.
I
meet with my urologist next week to go over the specific details of the biopsy.
If there is anything of interest I'll post it; but I'm pretty sure it will be
"see you in three months" for my next PSA and DRE.
Two
years out from diagnosis and things stay remarkably the same. I continue to have
quarterly check-ups (DRE and PSA) and remain commited to my course of treatment.
My Urologist concurs and is quite supportive. I wait expectantly for my next PSA
result as my September 2007 result of 0.62 ng/ml is an increase from my historic
range of .5-.57. I doubt it is significant, but PSA velocity is a big deal so
I am sensitive to any change.
I
just had my latest quarterly urologic exam. My PSA returned to it typical .57
level. The DRE was normal. My Urologist suggested we go to semi-annual visits,
but continue PSA testing on a quarterly basis. She does not see the need for additional
biopsies until either a PSA test indicates a change or a DRE results in discovery
of a change to my Prostate Gland.
Thrilling
news. I will remain vigilant in my protocol, but I feel like the "poster boy"
for a cautious and reasoned approach to Prostate CA. My case may be unusual (very
low PSA), but it should serve as a reminder that every presentation of this disease
is unique and we must all do the best we can to determine the course of conduct
which is best for us.
Will
keep you posted.
Jeff
Jeffrey's
e-mail is: jkrafsky@comcast.net
