Steven
Pincott and Maxine live in Connecticut, USA. He was 60 when he was diagnosed on
March 28, 2010. His initial PSA was 1.6 ng/ml, his Gleason Score was 7 and he
was staged T2a. His choice of treatment was RALP (Robotic Assisted Laparoscopic
Surgery). Here is his story.
By the time I was diagnosed in March 2010,
I had already been through a period of fear and trepidation. In January, at my
yearly physical examination, while giving me the hated DRE (digital rectal exam)
my GP said he thought he felt a little hardness on one side of my prostate. Discussing
it afterwards, he said I should see a urologist to confirm his finding, and referred
me to a urologist in the area.
I made an appointment and saw the urologist
for the first time in February. Submitting myself again to the degrading DRE (this
time performed by an expert), the urologist informed me that my GP was right.
Something was there. It was very subtle, and would likely have been missed by
most GPs. He recommended a biopsy, but told me not to worry about cancer since
my PSA was only 1.6 and I had none of the other symptoms of prostate problems.
How
could I not be thinking about cancer? Something foreign was in my body. The mind
ran wild, always to the dark side. The biopsy in March was no picnic, but no different
than other accounts posted on this site. The bloody semen made me even more miserable,
but that cleared in about 2 weeks.
Ten days after the biopsy the urologist
gave me the bad news. We made an appointment for the following week for my wife
and I to see him to discuss my options. The mind still ran wild, now with cause.
The week before my 61st birthday I told my family. The response from them was
a bit overwhelming. I had never been seriously sick a day in my life; now I was
dying from the dreaded c. At least that's what they thought. They took some comfort
in me saying that I wasn't going easily and that I would do what it would take
to stay alive, not only for me, but for them.
I hit the books, and the
internet, and spoke to some men I knew had prostate problems. There are quite
a few of us, and when I made my situation public, calls came in from unexpected
places. I got a call from a minister friend who underwent high dose radiation.
My wife's cousin told me he had his removed a year ago and was doing fine. Another
guy said he had radioactive seeds put into his prostate 5 years ago and was doing
fine now. I read a book called "The Decision", written by a urologist who had
prostate cancer himself and was faced with what treatment he would seek. I found
this book very helpful. So I thought I was pretty well informed by the time I
saw the urologist again.
My urologist, which I will call him from this
point on, first went over the results of the biopsy. He explained the Gleason
Scale, told me that the stage was evaluated as T2a, and utilized the Partin Tables
to provide a statistical evaluation of the progression of the disease. The only
thing troubling him was why my PSA count was so low at 1.6. He then went on to
outline the treatment options. In his opinion, because of my relatively young
age and general good health, all options were open to me. We went through the
pros and cons of each of the treatment types. He is a surgeon himself (not robotic),
and I had a distinct feeling that he felt surgery was my best option. He said
the decision was mine, that he would support my decision and see me through it,
would perform the follow-up evaluations and examinations, and be my urologist
for life if I so desired. I was to call him with my decision within a few weeks.
He said I didn't need to rush, that the disease progresses very slowly.
We
didn't however share the same sense of urgency. I wanted it out, the sooner the
better. I felt like I was in a race against time. The biopsy had shown the tumor
(about the size of a pea) to be close to the surface of the prostate. There was
evidence of perineural invasion, which to me meant that the cancer was getting
ready to penetrate the outer skin of the prostate and get out into the body. I
was already leaning toward surgery because of the possibility of completely eradicating
the cancer from my body. Robotic Assisted Laparoscopic Prostatectomy appealed
to me because I had read it was easier on the body and that the healing process
was faster. I called my urologist the next day with my answer; that I wanted to
talk to a surgeon that performed RALP. He arranged a meeting for the next week.
The
meeting with the surgeon went well. Initially I found him somewhat clinical and
a bit removed. I liked that he was very patient with all my questions and that
he answered them in a very straightforward honest and competent manner. I knew
from outside research that he was highly regarded throughout Connecticut. He gave
me some open dates in his surgical schedule. I chose the first available date,
about 1 month later.
The surgery was performed on Friday, May 7, and was
not without complications due to my particular anatomy and bone structure. The
operation took longer than expected, but in the end was successful. I awoke feeling
OK with my wife and son nearby. The day had been quite a strain on them, waiting
and waiting, so they were glad to see me apparently feeling so well. The worst
was yet to come. I waited in the recovery area for a room to open up.
The
day after the surgery was truly the worst day of my life. The carbon dioxide gas
they inflate the body with during the operation, along with the shutting down
of bowel functions due to the general anesthesia caused extreme pressure in my
abdomen. I felt like the Goodyear Blimp. The pain was awful, but I didn't want
to take strong painkillers because I was told they interfere with getting the
bowels to function again, a condition for my being released. It made for the longest
most miserable day and night of my life. By the next morning I had passed a small
amount of gas, but not nearly enough to relieve the pressure.
The next
day I ate some food, another condition for release. So having told them I had
passed some gas and had eaten, they were ready to release me to go home. It was
Mothers Day. I wanted to be home, so I requested to be released. If they knew
how much pain I was still in and how little I had eaten, and how little gas I
had actually passed, I doubt they would have let me go. Still, it was what I wanted
and I'd probably do the same thing again. The trip by wheelchair to the hospital
parking garage and the 10 mile ride home were uncomfortable. I was glad to be
home at approximately 11AM.
The house was full with family on Mothers Day.
I bravely made the appearance of being more robust than I actually was by playing
with the grandchildren and making the rounds. I enjoyed the day, but was glad
for the peace and quiet when they left. Now I could begin my real recovery.
Coping
with the catheter and the attached big and little bags was something I quickly
got used to. Mine would be in for 13 days. In the end I did quite well with it.
No infections or major irritations owing, I think, to being very clean and meticulous
when changing from big bag to little bag and vice versa. I had a few instances
of bladder spasms, but the medication prescribed by the hospital upon release
effectively took care of them. Irritation to the tip of the penis from the catheter
was taken care of with Bacitracin ointment.
Thirteen days after the surgery
I returned to the hospital to have the catheter removed. I had to go to Radiology
first, where they injected a radioactive fluid into my bladder through the catheter.
It was unpleasant, but only for a little while. I guess I didn't spring any leaks,
so the surgeon removed the catheter. It was not painful at all. I had read a number
of nightmarish accounts about catheter removals, but in this case my fears were
ungrounded.
I had another two weeks to recover at home before going back
to work. I knew I had to use this time to deal with the incontinence issue. I
had been doing Kegel exercises before the operation, but had stopped while the
catheter was in. I started doing them again, sporadically, not on any fixed schedule.
I have been lucky. From the day the catheter was removed I have needed no more
than 1 or 2 pads a day. By six weeks after the operation, I use no pads at all
and suffer very little leakage. Like I said, I've been lucky with this problem.
However,
6 weeks after the operation I have not had even a small erection. Occasionally
I feel a little stirring, but when I check myself I wonder why I bothered.
The
follow-up appointment with the surgeon began with him telling me that he felt
we had accomplished all that we set out to do with the surgery. The pathological
biopsy showed the cancer to be worse than originally expected with a T2c staging,
but the cancer was fully contained within the prostate, no cancer was found in
surrounding tissue samples and none in nearby lymph nodes. PSA was undetectable.
We had achieved the best possible outcome. He gave me a prescription for Cialis
to deal with the ED issue. As he said, this would give me a better chance at developing
an erection, but only time will tell. He then said we wouldn't have to have another
blood test until next year to measure the PSA. He invited me to be his patient
for the future.
This is when the alarms went off in my mind. The plan my
urologist had spoken of was more comprehensive involving PSA measurements and
office visits every 3-4 months first year post op and every 6 months the second
year and thereafter. Also my urologist spoke of these measurements as being very
sensitive with the goal of predicting a recurrence of cancer should it occur.
With my questioning, the surgeon admitted that my PSA was undetectable by the
standard measurement, which has a low limit of detection of 0.1 ng/ml. When I
asked him bluntly about ultra sensitive PSA measurements, his response was that
they don't use it here. This made up my mind as to who I would see for my follow-ups.
I
called my urologist and confirmed with him that he would be using the ultra sensitive
PSA test. He said yes, if I wanted it. I wonder if it comes down to cost and whether
insurance companies balk at paying for the ultra sensitive PSA test. [Cost
is not the only factor. Many doctors believe that the ultra-sensitive tests, because
of their relative unreliability can cause more concern than is necessary - see
ULTRA SENSITIVE TESTS].
For now, I'll continue on the road to recovery, hopefully. I've determined
to change my lifestyle by watching what I eat and what I expose my body to (sun,
air, pesticides, etc.) and to get more exercise. I'm determined to be a cancer
survivor. God willing I will be, but if not, I'll take one day at a time.
It
is now almost 20 months since my prostate was removed by RALP. As described previously,
the operation was considered a success in that the surgeon had achieved what he
considered to be the best possible outcome (i.e. complete removal of the prostate,
no cancer found in surrounding tissues, and undetectable PSA).
On a pre-established
recovery and monitoring plan with my urologist, for the first 12 months I visited
with him every 3-4 months, and now see him at 6-month intervals. Prior to each
visit, I have blood drawn and a PSA measurement is obtained. So far my PSA has
been undetectable by the standard PSA measurement scale.
Originally I had
wanted my PSA measurements to be done using the ultrasensitive PSA test method,
but in discussion with my urologist and from other sources, I have accepted the
standard method as sufficient. The rationale is that normal fluctuations in test
results to the 3rd decimal place below 0.1 ng/ml might cause undue concern that
the cancer had recurred. In any case, my urologist would not recommend any further
treatment before seeing a PSA reading of 0.2 ng/ml, well within the range of the
standard PSA method.
At each visit, my urologist asks me about pain in
the bones. For me, this is a difficult question to answer because at my 62 years
I do suffer pain from old athletic injuries and from osteoarthritis in my back
and shoulders. How do I distinguish pain from these conditions from the pain of
metastasized prostate cancer? He assures me that I will know the difference should
it occur. I'm not so sure.
As I related in my original account, I have
been lucky with the incontinence issue. From 6 weeks post surgery to present day,
this has not been an issue. Still, I am constantly aware that things are different
down there.
The ED issue is improving, but it is frustrating. I'm on a
program of taking 5 mg Cialis on a daily basis. Size and hardness are steadily
improving, but there is a distinct problem with the mind to body relationship.
It just is not there. It now takes a great deal more than just thinking about
sex to make it happen.
I have heard men talk about this state being the
new norm; that we must use what we have to the best of our abilities and get on
with our lives. I suppose this is true. I have nothing to prove, having fathered
children and having been a good lover to my wife. The ability to have sex on demand
should not loom large in my life. After all, I'm not servicing a harem of women.
Still, I hate to lose something I've had all my life, and this is what is hard.
I
have been following closely the discussions on Active Surveillance. Although I
agree that this strategy is not harmful for men diagnosed with early stage PC
(Gleason 6 or less), I think there is always some risk that higher-level PC may
exist but be undetected by the biopsy. In my own case (Gleason 7 [4+3]), the pathological
staging was upgraded to T2c from clinical T2a, meaning that the cancer was more
widespread in the prostate than originally thought. Facing my situation today
instead of early 2010, my choice of treatment options would still be relatively
straightforward. With high grade Gleason 7 and a detectable tumor mass near the
surface of the prostate, I would not be a good candidate for Active Surveillance.
Even though I have cancer, and have had surgery, and have been affected by side
effects, I don't envy men, knowing they have cancer, subjecting themselves to
repeated DREs, biopsies, and other intrusive screenings, hoping their Gleason
6s don't change to Gleason 7s, which is somewhat likely.
I'm constantly
aware that my cancer may recur. I think every cancer patient has this fear. I
try not to let living with this awareness negatively affect the way I live. So
far, with no reason to believe my cancer has returned, my life has returned to
nearly normal. 2011 was a good year.
Steve
Steven's
e-mail address is: spincott@comcast.net
