Chuck
Geiger
and Maureen
live
in Wisconsin, US. Chuck was
66 when he was diagnosed on December 14, 2005. His initial PSA was 12.1 ng/ml
and his initial Gleason Score 6. He was staged T1c and is still undecided on his
treatment. Here is his story:
In 1999 my PSA was 4.70 ng/ml. Then the biopsies began. I've had 8 biopsies. My
PSA bounced along, but upward. In May, 2003 it reached 6.10 ng/ml ; in May 2004,
9.6 ng/ml ; in Nov 2004 it was 10.4 ng/ml. In May, 2004 it was12.1 ng/ml. I've
had PSAs almost every 6 months; about half of them resulted in biopsies.
My
Free PSA was 10% in 1999, 11% in 2001, 9.8% in 2002 and 7% in 2003.
In
3 biopsies, there was high grade PIN.
The gland volume went from 29 cc
in 1999, to about 40 cc right now. Thus, increased volume does not explain increased
PSA.
The saturation biopsy (29 samples) Dec, 2005 revealed that the right
side had "two minute foci ...in 2 of 12 cores ... 0.5% tissue involved." Gleason
was 3+3=6.
The trend of the PSA, the bad Free PSA, the path report make
me think of doing surgery. With a PSA of 12+, I am not a candidate for Watchful
Waiting. I prefer surgery because: I will get a post op path report which will
indicate wheter the cancer was encapsulated, I'll get the same information from
the lymph and seminal vesicle reports. Also, if the cancer reoccurs, radiation
is the backup plan.
The surgery I'm scheduled for, March 13th, 2006, is
Da Vinci robotic, here in Milwaukee. The team has done 170.
I have 2 worries;
both involve scar tissue. I've had 3 hernia repairs, whose scar tissue can inhibit
the inflation of the abdomen. I've also had at least 125+ needle biopsy punctures
of my rectal wall. The resultant scar tissue might have "glued" my prostate to
the rectal wall, making the prostate harder to extract. Either of these problems
could cause my robot surgery to instantly convert to the traditional open surgery.
Now,
I'm worried that I'll need a surgeon who is expert and highly experienced in BOTH
the robotic and the open procedures. I've just written my surgeon, but won't hear
from him till next week.
What I had hoped was a simple decision process
has become more complicated.
In
early February, 2006, I was worried about my suitability for robotic surgery.
I wrote a brief letter to my Urologist, and got an appointment with him for February
15th, to discuss my concerns.
On February 1st, my Wife, Maureen, and I
went to the UsToo support group meeting, where I voiced my concerns. One of the
RNs there, Greg, works for Aurora, the group that operates St. Luke's, which has
the Da Vinci machine. His job title is Program Coordinator for Prostate Cancer.
Greg expects that he will join our club because there is a lot of PC in his family;
his father had a very unpleasant death. Greg has worked in Urology and assisted
in many surgeries. He doubted that my 3 hernia repairs would be a problem. He
hadn't heard of anyone with so many biopsies, and would ask Dr. Johnson about
that issue. He thought it would just require more careful work. The next day he
emailed me, reassuring me that those are not big problems. Thus began our acceptance
of the robotic option.
I have the good fortune that my Son, Steve, married
a woman in Minneapolis whose brother, Chris, is the regional salesman for Da Vinci.
His territory includes Milwaukee. At a Baptism in Minneapolis last year, I chatted
with him about the Da Vinci. Naturally he is very positive about it. My Son assured
me that Chris would be wearing his family hat, not his salesman's hat when talking
to me about my own situation. Chris took Steve to a Da Vinci demo. Steve had fun
there; he tied his shoes using it, and he's no surgeon. I e-mailed Chris about
my apprehensions. On February 6, he called me. He had done some asking around
about both the hernia mesh and the 125+ biopsy needle scars. He emphasized that
he can't speak as if he is an Urologist, but that he speaks to many of them, and
has a lot of anecdotal knowledge. He felt that the hernia is seldom a problem.
True, it could be, which would cause a conversion to open surgery. He couldn't
find someone who had encountered the excessi ve biopsy scar tissue. He observed
that the problem exists regardless of the type of surgery. He felt that, if anything,
the robotic method offers better vision (high resolution, 3D,15X), better flexibility
(7 degrees of movement, small instruments) and would enable the delicate slicing
through any scar tissue areas. He emphasized that the prostate is buried deep
in an almost inaccessible area; it's like having to work on something that's at
the bottom of a funnel. It's hard to get your hands in there. He also reminded
me that splicing the urethra back to the bladder neck is easier with the robot.
The robot can do one continuous, rolling stitch around the joint, whereas a traditional
surgeon can only do a couple stitches here, then a couple more, till he gets around
the circumference. He doesn't get as good a seal, nor can he line up the two pieces
quite as true as the robot. Chris told me that Da Vinci has been gathering data
for a while and he can't wait till they can
start to release the results.
Apparently the best results are in continence and potence. Of course, it will
take many years to get meaningful data on recurrence, the most important thing
of all.
Then I raised the question of using an 'artist'. He quickly rattled
off a few suggestions: Tom Ahlering at UC Irvine, David Lee at U. Penn, Kim Wilson
at City of Hope, Vic Patel at Ohio State U, and Shalhov at UC. Again, he insisted
that these are people he knows of; his is not a complete list. He pointed out
that Ahlering has developed a good technique for nerve sparing. He asked me why
I'd even think about going to California for this surgery; I answered that I thought
I was a difficult case. He pointed out that Matt Johnson, right in Milwaukee has
done 170 or so already, and that he was getting cases from all over the region.
Chris also remembered that Dr. Johnson went out to California last Fall to Dr.
Ahlering, and learned that new nerve sparing technique. He sort of said, without
saying, that I'm not so special, that it wasn't necessary to think about leaving
town for this. Chris was wonderfully careful not to be a Da Vinci salesman; he
was simply a family member giving straight advice. I began to feel much more comfortable.
On
February 15th, we had our chat with Dr. Johnson. He is very direct; he does not
do much hand holding. He was quite aware of both the hernias and the biopsies.
He was noticeably concerned about the rectal wall/prostate situation. He's done
20 cases with hernia mesh, and none had to convert to open. He seemed to know
that the scar tissue problem on the rectal wall would take extra care. He definitely
stated that my case had potential problems. Rectal wall damage is not good. I
knew that my procedure would be approximately his 200th. He said that the first
thing he does is look at the lymph nodes, and take a sample. He feels them and
decides whether to proceed with the surgery. He does not biopsy them immediately.
I decided to proceed with our scheduled date of March 13th.
Throughout
this, Maureen was far more worried than I was. She sometimes thought that I wasn't
hearing negative things that were getting said. I, of course, thought she was
missing the positive things. She was there when we talked with Greg, the prostate
RN, and Dr. Johnson. As I began to gain comfort with the robotic, she did too.
Nevertheless, I'm sure that I was the leader, and she followed that path.
Maureen's
Father is 100 years old. It almost helped that he got hospitalized for a urinary
tract infection the week before my surgery. That turned out to be a useful distraction
for her.
This is an emotional experience. You find yourself having what
turns out to be excessive concerns over various things. All the chat groups who
say do this, never do that, go only with an artist, it all contributes to the
emotions that are underlying. It feels that every decision is life or death. Should
we have the biopsy sent to another lab? What's the right procedure for me, given
my diagnosis, should I go to an artist? One question follows the other. You don't
realize how much of your life it takes over. People, most of whom are very ignorant
of the details of PC, look at you, talk to you in a different way. They think
you are suffering, and that the suffering has just begun. They don't know there's
no chemo, no unpleasant symptoms, so far. Nor do they know that after you do your
surgery, seeds, or whatever, you live the rest of your life wondering about recurrence.
On
Sunday, March 12th, 2006, I consumed only clear liquids and did the bowel prep.
That turned out to be the most unpleasant part. We've all had colonoscopies by
now, so we understand.
On Monday, we drove down to St. Luke's, got all
prepped and rolled in at about 7:15am. I woke up in my room about 11 am. I felt
my belly, found the catheter, and knew immediately that the robotic was performed,
that he didn't have to convert to open surgery. What a relief that was. Maureen
was sitting there, of course. She told me that Dr. Johnson told her that it went
very well. The lymph glands looked OK. The hernia mesh added about 10 minutes,
because he had to get under or around them. There was a slight repair to do on
the rectal wall; getting the prostate away from the rectal wall added another
15 minutes to the operation. It took almost 3 hours.
When I tried to reposition
myself in the bed, I lifted my legs. It merely felt like my abdominal muscles
were stiff. The description I love is that it feels like I did 100 extra sit-ups
yesterday. The only pain med I had was an IV similar to ibuprofen. The three hernia
repairs that I had many years ago were much more painful than this procedure.
I had no desire to lift my legs after the hernia repair. I felt the hangover from
the anesthetic. That was about the only way in which I felt abnormal. I hardly
felt like I had any big surgery. Later in the afternoon, the nurse asked if I
wanted to take a walk. I sat up, got up, walked 30 feet and felt funny. I turned
around and came back. She said I got up too fast. After supper, I got up two times,
walked the circuit with her twice each time. By then, the hangover was gone and
I felt almost perfectly normal.
Dr. Johnson stopped by about 9:30pm. He
repeated what Maureen had told me about the mesh and the rectal wall. He was very
happy with the nerve sparing aspect; he thought that went especially well. He
explained that I'd be on a liquid diet Tuesday and Wednesday, to help avoid constipation.
And that I should eat soft food at first. Perhaps he was extra careful with me
due to the rectal wall repair.
I got home Tuesday at 11am. We had 3 prescriptions
to fill: a stool softener, Vicadin for pain, and a pill for the bladder. We skipped
the Vicadin, thinking we could always get it if we needed it. We never did. After
lunch, Maureen went to visit her Dad. I went out for a 1 mile walk. My pace is
normally pretty strong, about 4 miles per hour. I had a pretty decent pace, considering
that I had a leg bag on, and my belly still felt the 100 sit-ups. I gave thought
to going to Tuesday night choir practice, but felt a little feverish. I had a
slight fever Tuesday and Wednesday evenings. The remainder of the week I did a
mile in the morning and another in the afternoon. I'm sure that helped my bowels
to normalize quickly. It also helped my belly. I think I took a nap twice during
the first week. I took a Tylenol on Tuesday, but I don?t think I needed it. I
never took the stool softener, never needed it.
If I hadn't retired two
years ago, I probably would have gone in to work on maybe Thursday, certainly
on Friday. True, I might have only done a half day. I definitely would have gone
back full days beginning Monday. We did not hesitate to attend a family gathering
Friday night, with my leg bag.
We couldn't see Dr. Johnson till the next
Tuesday, to get the catheter out. That Monday, I realized that I'll be needing
some sort of incontinence pads. I told my kids, I never thought that I'd be so
anxious to browse the Incontinence aisle in Walgreens. Tuesday morning, however,
it occurred to me that no matter how happy I'll be to get the catheter out, I'm
about to find out if I might be totally incontinent! Another emotional experience.
Dr.
Johnson thought things looked fine. The lab report said that the Gleason went
from 3+3 to 3+4; there was also perineural involvement. Dr. Johnson said these
two factors are risk factors; some of those 4s could have exited via the nerve
paths. There could be cancer cells out there in my system. The lymph nodes and
seminal vesicles were OK, and the margins were positive. The cancer involved about
15% of the prostate gland, only on the right anterior quadrant in the mid and
basal regions. Dr. Johnson disagreed; he showed me the pathologists rendition
of the tumor and declared that it was a little over the border into the left side.
Therefore he feels that it was T2C. Pathology reports can be very sobering. I
knew right away that I'll be quite anxious for that first PSA result in June.
The
nurse took out the catheter (another non-event) and we went home. Within an hour,
I went to pee. Whoopee, it worked. I could even stop it in mid stream. All those
Kegels paid off. I wore a big thick incontinence pad Tuesday. On Wednesday, I
went and got the thinnest incontinence pads. I changed them once a day. Nights
were no problem.
On Thursday, while taking my shower, I washed down there,
only to notice that my scrotum was about the size of a grapefruit. Nothing hurt;
it was just weird, especially when attempting to sit down. I called the office;
they assured me that was quite typical. By Saturday, I thought of wearing the
bikini style briefs that I wear when I play tennis. That seemed to work like a
compression stocking. As long as I had those briefs on, the scrotum was normal.
By mid shower, it was huge. Minutes after putting on the briefs, back to normal.
By Monday, that stopped.
The too many sit-up abdominal muscle aches began
to melt away during the second week. Now, what I can feel is something down where
the prostate used to be, in the area of the perineum. It feels sort of like it
used to when you kegeled the day after a biopsy. It's not a pain, but it is a
sensation. A few times, when I've been standing longer than an hour, it almost
becomes a pain, but this is not consistent. My guess is that it is simply the
healing that is going on in that region which was recently greatly disturbed.
Two
weeks after removing the catheter, which is three weeks after surgery, my incontinence
improved noticeably. I had only had what is called stress incontinence. There
would be a squirt when I got up, when I turned around, etc.. But that significantly
diminished. I told Maureen that I went from 98% continent, to almost 99%. A week
later, that went up to 99.5%. I'm now wearing not an incontinence pad, but a woman's
pantiliner. I'm not ready to go without anything yet.
It's amazing how,
when you get up, within about 5 seconds, gravity pushes on your bladder. I suppose
it's always done that, but now I'm aware of it. I don't know if my sphincter is
slowly going into automatic, but I seem not to squirt anymore upon getting up.
I almost don't know now, just when some drips come out, but come out they do.
Impotence
is something I haven't addressed yet. On the web groups, I get the impression
that the pills and or the VED might be worth trying soon. I'm thinking about that.
My
outdoor tennis group begins in May. I definitely plan on being there. I might
wear a thick pad the first day, just for insurance. My overall condition, mentally
and physically, just couldn't be better. I'm trying to remember that Dr. Johnson
told me that this healing actually takes a good six months. I'm trying not to
be stupid and do too much. The almost daily 2 mile walks are completely effortless,
at full pace.
I suspect that in the next five years, the robotic surgery
will be the norm. I?m guessing that the current practitioners will be willing
to surrender their beloved tactile feeling, in trade for excellent field of vision,
great dexterity in an almost unreachable area. We patients will be happy to not
need transfusions, have almost no post op recovery time, not need any pain meds,
have better continence and perhaps better potence. My statement assumes that long
term recurrence will be at least equal to the open prostatectomy.
Now,
I wait for my June, 2006, PSA.
I
went to the Dr. for my first PSA results. It was 0.10 ng/ml, which is considered
to be undetectable. He asked about incontinence and ED, erectile disfunction.
Incontinence is just about gone, hardly ever do I have even stress incontinence.
As to ED, I was just about starting to get occasional feelings, stirrings, not
to be confused with an actual erection. He suggested Viox, Levitra or Cialis 3
times a week and a VED, vaccum erection device 20 minutes a day, at least 5 days
a week. I'll be doing that. From reading the chat lines, I realize that ED takes
it's own sweet time, over many months, to resolve itself. I think that I'll end
up OK.
On
the morning after my Da Vinci prostatectomy, I noticed what looked and felt like
a hernia. I sort of figured that yesterday's procedure might have disturbed one
of the 2 hernia repairs (from 15-20 years ago) on that side. However, I also remembered
that I suspected another hernia late in the winter. Dr. Johnson poked his finger
and I coughed. He said I should go to a surgeon to get this hernia repaired. He
also reminded me that this isn't all over yet, that the recurrence rate of PCa
is 30%. Maureen didn't like hearing that.
On
Monday, July 24th, 2006, I had the hernia repaired. It turns out that I got a
bonus! With most hernias, what pops through is part of the intestine. What was
popping through on mine was my appendix. The odds for that are about 1 in 1,000.
My appendix was not inflamed, so it was still its normal size, about the size
of my little finger. So he removed my appendix and repaired my hernia. The anesthesiologist
had never seen this; this was the 4th one for the surgeon, who has done thousands
of hernia repairs.
What
is fascinating is that the first days after the hernia repair are much worse than
after the robotic prostatectomy. This hurts; I took pain pills. I'm slightly dizzy
from meds. I don't feel like doing anything. I'll take a prostatectomy any day.
After
a full year, I remain wonderfully continent, but, alas, still impotent. I continue
my activities: biking, tennis, downhill skiing, walking. I do take Viagra, 50,
every other night, from All Day Chemist, with little effect.
The
next PSA continues to be something that gets my attention. I guess that'll be
the case for 10-15 more year.
In
January, 2008, I experienced SHL, Sudden Hearing Loss. During the night I heard
a ringing sound in my right ear. I just continued sleeping. In the morning I couldn't
hear a darn thing in the right ear. I was also very dizzy. We immediately went
to the hospital. They tested for stroke, because of the dizziness. Two days later
the Otoneuroligist explained that I probably had a lurking virus, like mumps,
measles, chicken pox (think Shingles)or Herpes simplex. Any of these can park
on a nerve and attack years later (think Shingles.) I mentioned that I took Viagra
daily for ED. He definitely added that to the list. The dizziness tapered off
in a couple of weeks. The hearing never came back. It's not much of a problem;
the other ear is in good shape.
I
stopped taking the Viagra, a generic which I got from the Indian pharmacy. I have
continued to take L-Arginine. My ED persists. My PSA continues to be undetectable.
So
life is good.
Chuck's
e-mail address is: chgeiger@wi.rr.com
