Christopher
Edwards
and
Barbara live in the USA. He was 58 when he was diagnosed on May 23 2005. His initial
PSA was 7.26 ng/ml and his initial Gleason Scorewas 3+3=6. He was staged T1c and
his choice of treatment was Robotic Assisted Laporoscopic Surgery
Here's
his story:
I'm
Barbara, writing for Chris.
Chris is overweight, classified as obese,
has an enlarged prostate and had rising PSA levels over the last few years. Two
years ago, the doctor prescribed Cipro, Chris took it, and his PSA levels dropped.
When he had a PSA of 7.28 ng/ml, our primary care physician recommended
him to a urologist, who decided a biopsy was in order.
The biopsy revealed
no cancer in the left side, but 1 of 7 cores in the right side tested positive,
with 10% of it being cancer.
We immediately began exploring options
and learning things about PC. YANA was a tremendous help to us in that regard.
We'd initially thought that radioactive seeds would be the way to go--quick,
less life-disruptive, effective. But the more we learned, the more we realized
that it was not the way Chris wanted to go. One of my first cousins has had brachytherapy
and is still concerned about his PSA levels when they rise. He didn't want to
go through another time of wondering what rising PSA levels meant. And then we
found out that a good number surgeons are not willing to operate if the brachytherapy
was unsuccessful, so that sealed the decision for us on whether to do radiation
therapy or to get an operation.
Our diagnosing physician indicated that
he thought laprascopic surgery would be a good protocol for Chris, so we did more
research into it. He said that Chris' weight might be an issue, but didn't take
it any further at that time and did not say, "Get your butt in gear, buddy, and
lose some of that weight." This was toward the end of June. We made an appointment
with the surgeon recommended by the urologist--three weeks later we were to have
the meeting.
In the meantime, research into monster who had invaded our
lives continued. We found out about the results of studies with tomato-sauce and
the diet began to shift toward eating at least one tomato-sauce based dishes a
day--spaghetti and chili became some of the 'daily breads'. We also increased
the consumption of broccoli and other vegetables--red meat disappeared from the
diet. I also contacted some of the top-rated hospitals and began to get an inkling
that Chris' weight would be a real obstacle for many surgeons doing Chris' preferred
type of surgery after talking a person from the Vattikuti Urology Institute who
said for his height, 200-210 was about the maximum weight.
The meeting
with the surgeon was delayed due to his having to free his schedule to do surgery.
We scheduled an appointment with another surgeon--just in case and to get another
opinion.
And we restarted exercising on a regular basis. The first two
days, we walked in the commuter parking lot where I leave my car for the daily
commute to work. As the weather got wretchedly hot, we switched to walking in
the pool.
The weight is coming off--just like it should--slowly, but
steadily. Last night, we were talking about me having to hem some smaller-sized
pants that Chris has.
We met with one surgeon on 12 August and another
on 15 August. We found out that each of them had done a high number of Robotic-assisted
surgeries and we liked both doctors. They both practice fairly close to home and
very convenient to my workplace in Washington DC. We are fortunate in having them
nearby. We haven't decided definitely which one will do the surgery but will see
one of them later this year and get it scheduled.
If the weight continues
to drop, the surgery will be done in January; if it stops falling, then we'll
schedule for October. We are going on a two week vacation and hope it is active
enough, with restrictions enough on the diet to keep the weight dropping as we
have a good time together.
Although we've read a lot about what to expect,
talking to the surgeons helped to allay some of our fears. The surgeons felt the
waiting a few more months would not change the outcome, but that the weight loss
would definitely help. And, with the changes in his diet and exercise regimen,
we hope they are right. No looking back, though, and second guessing any of it.
We are hoping for clean margins--I'll put in more info as we progress through
this.
We
just returned from a 2 week vacation in Ireland. I made a big batch of chili on
our return, bought fish and broccoli, so we are eating right.
Chris
ate lots of fish with side orders of broccoli and he dropped more weight while
in Ireland because we kept on the go from dawn to dusk. He's at 220 now (one pants
size smaller) and we are aiming for 190 by mid January. If he continues to progress
at the current rate, he will reach that. No matter where he is with his weight,
though, the operation will occur then and by spring, he should be well enough
for us to open the pool and resume aquatic exercises there. I'll continue to update
YANANOW as we get through this.
I know that the next 6 months won't
be the 'best' of our lives, but we'll be fine, I think. It's always easier to
get through a tough time with someone else to help drag you along. I just hope
it's like a big hill with flat areas and downhills on the other side, but we won't
know that until after the operation.
Thank you for maintaining the site.
I really needed to get more info from the patient's perspective--to learn the
negatives on different treatments from the patients--rather than read the same
old stuff about radiation therapy and operations written by doctors and others
in the medical profession. They somehow left out a lot of the important things
and our diagnosing physician didn't hit the details that were essential for making
the 'right' decision for us.
Chris is great about researching whatever
we need to buy for the family in the way of electronics or vehicles, but seemed
reluctant to do research on this subject and left it to me--which is fine as I
conduct research as part of my profession so it was not a problem.
I'm
Barbara, Chris' wife and I'm updating his story. When initially diagnosed with
prostate cancer in June, 2005, Chris' PSA was between 7 and 8. He weighed about
235. A DRE showed an enlarged prostate (as it had for a few years), but nothing
else. A biopsy was ordered to 'be on the safe side'. The biopsy showed one core
of 14 with about 10% cancer. In some ways, we are both glad that it showed up--if
it's there, better to deal with it than to go along in blissful ignorance.
I
searched the web for information so we could find the 'best' treatment. I printed
reams of paper on different aspects of prostate cancer and we finally decided
that laprascopic surgery was 'the way to go', given the pros and cons of the alternatives.
Much of the information that helped in the decision came from the people
who had shared their stories here, on this website. I then went about trying to
find the 'best' doctor for the surgery (I'm a researcher by profession, so it
was natural for me to do this part, plus he's my partner of 34 years and I'd like
to spend at least another 34 with him).
I read about and had some email
correspondence with a surgeon in Florida, but Chris didn't want to a) go to Florida
for an operation and b) spend the money to go to Florida for the operation. Like
many skilled surgeons, the one in Florida does not accept insurance so the fee
would have come from our pocket.
We are members of Kaiser Permanente and
sometimes there is a wait to see the doctor; when one is diagnosed with cancer,
a wait can seem endless. So I persisted in my search and found information about
the Vattikuti Urology Institute and called and asked them about Chris becoming
a patient. The positives on 'outpatient' surgery just seemed wonderful and their
track record was great too. And the surgery price was about half the price of
the person in Florida. Of course, Chris did not want to: a) go to Detroit and
b) pay to go to Detroit for the surgery. But I investigated it anyway because
it bothered me that he had a cancer in him. I talked to one of the people at Vattikuti
and found out that they probably would not him as a patient because of his weight.
Well, this is the first time we knew that weight reduction would be helpful.
We still hadn't met with the surgeon at Kaiser, so we started on changes in diet
and an exercise regimen. We also booked an appointment with a second Kaiser surgeon.
When we talked to the second surgeon, he didn't see a problem with waiting
until after our scheduled vacation because it appears to be a slow-growing cancer
and, yes, getting the weight off would help.
We met with the first surgeon--the
one to which he was initially referred and decided he would be the one who will
perform the surgery. He also agreed that it should not greatly hurt the odds of
getting all the cancer to wait.
All this occurred over the summer; Chris
is now at 220 (fully clothed); 215 otherwise. His PSA has dropped by a little
over one point, too, so we are optimistic that the cancer is as contained, if
not more so than when it was diagnosed. Surgery is scheduled for 12 January--less
than a month away. I had thought we both were in touch with reality until the
date for the surgery was 'set'. We both felt like we were walking down a railroad
track and that the train was almost upon us. Thankfully, that feeling passed in
an hour or so.
To assist those of you who also try to manage the cancer
either by watchful waiting or during a period when you are trying to accomplish
a goal, such as weight loss before surgery, one thing we found in a seminar conducted
by the American Cancer Society and through some online readings and from our surgeon
is the following:
1) Prostate cancer likes to live in overweight men. So
if you are overweight, start losing it, but in a sensible manner--diet and exercise.
2)
Prostate cancer seems to love red meat--drop red meat from the diet and the cancer
will not grow so aggressively.
3) Lycopene in the form of tomato sauce
or tomatoes cooked in some oil (like olive oil) has shown some success in shrinking
prostate cancer--eating raw tomatoes won't do the trick. The researchers think
the lycopene needs to bond with oil to be absorbed into the body. Chris has been
taking a lycopene supplement and I've cooked a lot of chili and soups and pizzas
and spaghetti in the past few months. Fortunately, we like that kind of food.
4)
Fish oil and adding fish to the diet is a good thing. So we have fish about 3
times a week now and take fish oil supplements.
5) Don't forget the green
vegetables and the fruit in your diet. Many of them contain antioxidants.
There's
other changes we have made, such as working out 4 to 6 times a week, an hour at
a time--either walking on the treadmill, outside, or in the pool.
I wish
you all well and hope that this is helpful to someone out there. I'll give an
update when the surgery is history and Chris is recovering.
Chris
checked into the hospital (Fairfax Inova) on 12 January and had robotic-assisted
laprascopic surgery to remove his prostate later that morning. Dr. Steven Guarnaccia,
one of the Kaiser Permanente surgeons in the Virginia area, performed the operation.
The operation lasted about 4 hours.
Chris did not get up and walk that
day. Basically, he was in too much pain from the CO2 gas that was used to inflate
his abdomen to get up. That pain was there on and off for about 3 days. Chris
didn't have any pain at the incisions.
Although I had read a lot about
people's experiences with surgery, I had not read anything about drains and what
they mean for the patient or anyone assisting the patient, like me. I had read
extensively and was expecting most of the things that occurred in the last 3 ½
weeks, but the drain was a surprise. Thus, I'll focus for a little while on the
drain to let you know our experiences and what to expect. I go into detail that
you might not appreciate; skip to the next section if you want to know about any
other phase of the post-op period.
THE DRAIN
The
morning after surgery, when I saw him, I checked the bottle for his drain and
found that it was about completely full--half of fluids and the rest air. The
dressing around the tube that entered his body was bloody and wet. I thought it
would be a good idea to get some of the air out of the bottle so it could fill
with more fluid. So I took the plug out of the drain bottle and the fluids immediately
filled the bottle and it began to overflow. I grabbed the wastebasket and held
it under the bottle until I was able to get the plug back into it. So...if you
have the operation and have a drain, either you or the person at the hospital
helping you learn something about that as soon as you can. The nurses were not
too happy that they had blood in the wastebasket liner*they had wanted to carefully
measure everything that came out of the drain and having part of it unmeasured
was not what they had anticipated.
Chris went home with the drain and,
when I drained the bottle, I'd measure the contents and record the date and time
and amount of fluids. The fluids were bright red initially and would make one
think, "Is there something wrong*was something not stitched up?" Then the fluids
became more yellow and that made me think, "Is there something wrong*was something
not stitched up*are they fluids from the bladder?" When Chris would walk around,
the red tint would return to the fluids, but by 3 or 4 days after the operation,
they were starting to remain yellowish. The quantity of fluids at that time was
about 100 cc. in a 24 hour period*which was considerably less than the 200+ cc
the 24 hours after surgery. Now, I don't know for sure, but I think there was
nothing unusual about the amount of liquid being discharged through the drain
or its color. Ask your surgeon or a nurse what to expect if you want more information.
When
Chris was in the hospital, one of the nurses said they don't like to remove the
drain until there's about 30 cc of fluid being put out in 24 hours. We returned
to the doctor the Monday after the operation and he left the drain in place and
sent some of the fluids off to be tested to determine their content.
We
called on Friday and he said to come in and he'd remove it. Chris was discharging
about 60 cc daily at that point. We found out that Kaiser had sent the fluids
to an outside lab in San Diego for testing and it would take about a week. It
was a surprise to the surgeon and to us. I was concerned about the drain's removal
because I'd also been told that some of the chemicals in urine cause the bowels
to cease functioning and we had no assurance that it was not urine. Needless to
say, all was fine and the bowels continued to function well.
After the
drain was removed, fluids continued to seep from the incision for a few days.
The first night, as I was getting ready to put a bandage on the area, I asked
Chris to lift upward on the entire area so I could tape on the bandage more easily.
He inadvertently separated the incision by lifting the top part of it up and pushing
the bottom of the part down. It began to drip quite a steady amount as I yelled,
"Stop!!!" Again, it didn't hurt him at all, but it made me very nervous. Every
time that I re-bandaged it, I put on antibiotic/antibacterial cream, gauze and
tape after swabbing the area with damp Q-Tips. After a few days, the area scabbed
over and I quit bandaging it.
STAPLES
Chris
did not have external dissolving sutures, but had staples. The staples were removed
a little earlier than possibly they should have been*8 days after the operation.
We were at the doctor's appointment for the removal of the drain and he went ahead
and removed the staples at that time. The primary incision bled some the night
after the staples were removed. Removing the staples was a painless undertaking
for Chris, so if you wind up with staples, don't worry*their removal is really
not painful.
THE PRIMARY INCISION POINT
The
incision that occurred slightly above Chris' belly button was the primary incision.
Although it has been almost 4 weeks, we still keep a bandage on that area except
at night. The area still oozes to some extent because it is larger than a normal
laprascopic incision and is taking a little longer to develop a dry scab.
As
I mentioned earlier, the incision bled some the night after the surgery. We think
that bleeding was due to Chris putting his arms above his head to put on a shirt.
Needless to say, he didn't do that for a few days and there was no subsequent
bleeding.
PATHOLOGY RESULTS
We received
the pathology results 8 days after the surgery. His Gleason score is a 3+3, with
cancer in both lobes. The prostate was 95.5 grams, about 3 to 4 times larger than
the average prostate. The pathology report showed the results from 20 slides taken
from the prostate and indicate that the cancer was contained within the prostate.
We'll know more after the PSA results which will be taken about 6 weeks after
surgery.
CATHETER
The catheter was removed
20 days after surgery and the only residual problem at this point is incontinence.
The incontinence has shown some lessening since the day the catheter was removed
and we hope to report to you in a few weeks that he has full continence. I was
advised by another PC survivor today that, when the flow is greatly lessened,
he should switch to some ultra thin pads (designed primarily for women) as they
are less bulky and uncomfortable in clothing. I'll let you know how that goes,
but for now, he's wearing jockey shorts with a heavy pad during the day and briefs
at night. There's been no noticeable leakage outside of those garments. We are
taking life a day at a time, with Chris avoiding alcohol and caffeine and other
things that seem to contribute to incontinence and looking forward to a dry day.
We'll deal with other issues, such as impotence a little later. I'm just so glad
to have him doing so well at this point and, hopefully, cancer free.
If
you have questions or want more information, please let me know.
I'm
Barbara, updating Chris' story.
We
returned to the doctor's office on January 3. It's been almost a year since the
surgery and the current PSA is <.001. YIPPEE!!!
Well,
life is not all a bed of roses, but we are not complaining.
There's still some incontinence to deal with, although it is slowly, but surely
improving.
And
there's still impotence. Cialis has been tried, but didn't work. We will try that
again for a couple of weekends, but are scheduled to go to the doctor on January
30 for a penile injection and training on how to self-administer the medication.
If
anyone has any experience with this, I'd love to hear from you--good or bad. I
specifically want to know if there's any good medical reason for taking this step
and what your experience was regarding the needle/injection part. (We don't need
you to describe your sex life post-injection...)
Chris
is not feeling good about this (and I sure as shooting don't blame him as I'd
not like the idea of having to inject something somewhere in me every time we
decided to have sex). So I don't know that it's "the best thing" for us to do.
I'm 54 and just pleased as punch that he's cancer free. If the sex happens, great;
if not, then that's ok, too. It's not the end of the world.
And
I want to thank you again, for being there, YANA. It helped us get through some
experiences much more easily than if we'd been totally unprepared.
Hi,
This is Barbara, updating Chris' story.
I
am remiss in putting in an update, as life continues and we are most happy with
where we are at this point, although life is not quite as it used to be. Still,
the cancer appears to be gone (although we cannot say he's cancer-free for another
5 years according to Chris' surgeon).
Chris'
last PSA test was in February, 2008, and we celebrated his good news.
Chris
continues to have some problems with incontinence. It's not a big deal and is
part of life now. He wears a pad during the day to keep from staining clothes
and really only has a problem if he waits too long between bathroom visits or
if he gets in a position (primarily squatting) that puts pressure on his bladder.
Chris
is still on blood pressure medication and between that and his operation, he is
not getting erections. Although we had tried the injections, he had problems with
hemorrhoids, which we think was brought on by the prostate surgery and has been
using a nitroglycerine-based ointment as medication. He was told not to use the
two in conjunction, so we have discontinued the injections.
I
urge any of you who have been diagosed or who have a loved one who was diagnosed
to seek treatment. There are a wide range of options and you need to find the
one that is 'right' for your situation. We think we made the right decision. Should
you have any questions, do not hesitate to contact us.
May
your days ahead be brighter.
Chris
and Barbara's e-mail address is: spec4lover@yahoo.com.
