I
had second opinion meeting with another urologist yesterday - he recommends brachytherapy.
Original diagnosis and disease stage was confirmed by a second lab analysis too.
Will
have consultation with radiation oncologist next.
After
researching brachytherapy, the treatment recommended by our second opinion urologist,
we have decided to go for da Vinci surgery. We
are uncomfortable with the long term possibilities that the seeds will not eradicate
the cancer and our options if there is a recurrence will be limited.
Because
the docs here in Alaska have not performed as many of these procedures as we would
like, we researched the Seattle area urology groups and hospitals to find someone
with more experience. Based on the personal recommendation of a physician friend
in Seattle and our internet daVinci research, we chose Dr. James Porter at Swedish
Medical Center as our surgeon. We scheduled the surgery for the earliest date
he is available - March 5.
The
7-8 weeks prior to the surgery give me the chance to strengthen myself physically
and lose a few pounds. Though I am relatively fit and more active than most, I
know I have room for improvement, so I am trying to increase my exercise and manage
my eating habits. My hope is that I will have a better recovery post-op from doing
abdominal crunches and Kegel exercises.
Despite
the relief I feel from finally making my treatment decision, I still feel generally
depressed. I am pissed that we have to endure this.
I
leave for Seattle tomorrow night for surgery on Wednesday (March 5) at Swedish
Medical Center with Dr. James Porter.
A
few weeks ago, I decided on my own to get another PSA test. Since my last PSA
was almost six months ago in mid-September, I was curious to see where I am now.
Had it gone up? Was it holding steady or even decreasing due to the new diet regimen
my wife had helped me set up? The PSA came back at 0.8 ng/ml, down to the level
I had consistently had for six or seven years each fall before the jump to 2.5
last September that triggered my biopsy! We are surprised and puzzled. What happened?
Unfortunately, the biopsy in October had revealed the cancer, and that cannot
have changed. Can it???*Note* Despite
this new information, we have rejected watchful waiting as an option. We want
the cancer out.
FYI
- the dietary changes we made: lower fat diet (even though I have not eaten red
meat in any significant amount for over 30 years), eliminated dairy milk, switching
to soy milk, added pomegranate juice and capsules, Vitamin D and Super B Complex
supplements, fish oil, green tea and flaxseed capsules, and aloe vera gel. These
changes were based on personal discussions with other cancer sufferers, web postings
and emails we received (thanks, Lan!). I lost about 5 pounds to 175. Best to all
of you, and thanks for your postings and emails directly to me.
As
of today, I am about three and half weeks post-surgery. Both nerve bundles were
spared during the five-hour surgery. The post-surgical path report a week later
was excellent - CA confined in gland, no margins, all good news. The experience
at the hospital was excellent too. Susan and I were both very impressed with Dr.
Porter and his entire surgical team from admitting staff to anaesthesiologist
to nurses to Dr. Jeff McCracken, a surgical Fellow working with Porter this year
from Canada. His explanations of what to expect, both pre- and post-, were very
thorough and compassionate. We related very well to him, as well as to Dr. Porter.
The
catheter was removed one week after surgery - that action, coupled with the good
pathology report, made for a celebratory day for us in Seattle. We walked all
over town and had a couple celebratory cocktails at the excellent Brooklyn Seafood
and Oyster House. Very nice! I had good urinary flow and reasonable control right
off the bat. Unfortunately this was short-lived, as the next morning, I could
not urinate. I was having very painful bladder spasms and a very difficult morning
as we packed and prepared for our three hour flight back to Anchorage scheduled
for that afternoon. It got so bad that we had to go back to the doctor's office
a few blocks away where the catheter was reinserted - major bummer! We had to
hustle to make the airport shuttle, suffer through security and board the plane.
As good as the previous day had been, this day was pure misery. Before we left,
Dr. Porter called the Anchorage urologist I had previously seen for a second opinion,
to arrange for my follow-up appointment four days later to have the second catheter
removed.
Since
the removal, I have had good urinary flow most of the time, but some leakage when
I cough or pass gas or move in different ways. Except for one unfortunate complete
void while trying to hustle back home on a morning walk, the amount of leakage
has been relatively small. I have been using one to two liner pads a day.
Per
my doctor's post-surgical instructions, I am avoiding doing Kegels for eight weeks
after surgery, but I have noted that other docs recommend starting them right
away. I did many of these pre-surgery to aid urinary control after the operation.
I'd like to establish better control sooner, so I am not sure which is the best
way to go. Any experience-based suggestions would be appreciated. Also, just this
week, I have felt some general discomfort in my abdomen that I feel is related
to sitting up too long a few days at work. When I went home early to lie down,
I felt much better. Internal swelling is an issue that seems obvious, but I did
not really think about in advance. I believe it will take time for that to resolve
itself.
As
prescribed, I began taking 25 mg. Viagra the night the second catheter came out,
and had a first partial erection four days later, a very pleasant surprise. I
am taking that dose nightly and will try taking a 100 mg dose once a week, per
a regimen we read about on
YANA.
All
in all, we are pleased with the outcome, and trying to take it easy and be patient.
Thanks for all your supportive emails and good wishes.
It
has now been almost 18 months since my Da Vinci prostatectomy, and I am doing
very well. My three or four follow-up PSAs have all been >0.01, i.e., "undetectable",
and all indications, according to my urologist here in Anchorage, are that a recurrence
of PC for me is unlikely. However, I have met enough men (through my participation
with the local Us TOO group) who have had later episodes to realize that there
are no guarantees.
As
far as ED and incontinence go, I have had generally good results. I qualify this
a bit for a couple of interrelated reasons. I have been fortunate to have not
experienced what I consider to be incontinence (I was off of pads within 3 weeks
of surgery). But at the same time, I am not happy with the occasional urinary
leakage that occurs in the form of not feeling that I have completely emptied
my bladder after urinating. This is what I call "drip and stream", i.e., I think
that I am finished with urination and make one last "push" and a "fresh" stream
of surprising volume comes out. These are not large volumes, but I have spent
many minutes standing at a urinal at work or in the bathroom at home going through
cycle after cycle of this "drip and stream". This has happened with less frequency
over the months, but the recurrence when it does happen is frustrating. I keep
waiting for this nuisance problem to disappear completely.
Minor
urinary leakage has also been an impediment to satisfactory sexual activity. We
have had two or three episodes of love-making where I spilled urine. This has
affected my confidence and made me apprehensive at times about initiating sex
though my wife reassures me that it has not been a big deal. For me, there's an
"eewww" factor -- this is not supposed to happen! But, I am able to achieve good
erections most of the time using Viagra, Cialis, or Levitra, and, even at this
time, occasional spontaneous erections. I feel this whole area continues to improve.
I have recently started a low-dosage daily Cialis regimen to see if more spontaneity
and fewer side effects will be possible. It is too soon to tell about this, but
I really dislike the red-faced, flushed look and headaches that I get when I take
any of these drugs. They do work quite well for erection unless I am stressed
or preoccupied. There is a big psychological barrier to overcome here. Another
vexing thing for me has been the change in orgasm - no fluids, less sensation.
It is still pleasurable, but not the same kind of climax as pre-surgery.
I
still feel very strongly that the treatment choice we made was the best for my
circumstance, stage and condition.
Since
Susan and I have been partners throughout this life event, we will both share
our perspectives about my progress:
Hi,
I'm Susan, Tom's wife.
Regarding
ED, there have been some frustrating moments for both of us since the surgery,
but they really have been minor (probably more frustration on Tom's part than
mine). Things are definitely not 'the same' as they were before the surgery, but
we've adapted to the differences. Tom was able to have erections a week after
the surgery which was quite a relief. I had done a lot of research prior to the
surgery and asked Dr. Porter about the 'use it or lose it' theory. He advised
to go ahead with that, but I did have to ask about it. Overall, I feel he glossed
over the sexual side effects a bit, but I had been expecting that. I have read
many people's pre- and post-surgical accounts and have found that it's common
for surgeons not to dwell on that particular aspect of the post-surgical outcome.
I don't think that Dr. Porter was unrealistic about the outcome (in fact, things
have turned out much better than his prediction), but my advice to anyone considering
any type of treatment is to do your research and ask a lot of questions. I really
feel that pre-surgical Kegel exercises (Tom started about 6 weeks before surgery)
were quite helpful with both ED and incontinence issues.
I
think I was more concerned about permanent incontinence as both of us are active
hikers, bikers, skiers, and snow-shoers. Although he is sometimes frustrated by
feeling that he hasn't completely emptied his bladder, he is doing incredibly
well. We know that everyone's experience is different – we also hope that the
experience of others is as trouble-free as ours has been. It's a difficult thing
to go through and we still feel a sense of loss at times, but we’re glad Tom is
alive and cancer-free.
Tom's
e-mail address is: tandspc@gmail.com
Note:
Although Tom is asking a rhetorical question here, another mentor - Dave
Martinez found that the hospital at which he was to have his surgery disagreed
with his diagnosis and said he did not have cancer. It can happen which is why
it is so important to get a second opinion on any biopsy from an expert pathologist.
Tom
Englehart and Susan live in Alaska, USA. He was 57 when he was diagnosed in October,
2007. His initial PSA was 2.5 ng/ml, his Gleason Score was 6 and he was staged
T1c. He is undecided as to his choice of treatment. Here is his story.