Now that your biopsy is positive, here are some more expensive tests
artf...@gmail.com
analysis for dealing with my recent diagnosis, I have been struck by
Chodak’s arguments about the testing that comes typically after a
positive biopsy. He argues that the bone scan and pelvic CAT scan for
lymph node spread are not good tests. This hit a nerve with me
because I have a series of these tests scheduled.
There are three videos in point:
* Determining if Cancer has Spread to the Bones
http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-cancer/bone-scan-for-assessing-cancer-spreading-to-the-bones/
* Determining if Cancer is In the Lymph Nodes
http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-cancer/ct-for-staging-prostate-cancer/
* MRI/Color Doppler Ultrasound for Staging Prostate Cancer
http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-cancer/mricolor-doppler-ultrasound-for-staging-prostate-cancer/
At least part of Chodak's argument is that radiology / nuclear
medicine testing is not as reliable as the predictive power of Gleason
scoring and staging, and that it can lead to bad decisions. This is an
argument he develops against MRI / Ultrasound where is it easy to
misjudge whether or not a cancer has spread beyond the capsule.
In the case of a bone scan, he indicates that that men with PSAs of
less than 20 show spread to the bones in only 0.3% of cases and that
in 13% of cases, the bone scan shows abnormalities that will require
further testing in order to determine the real cause. These include
CAT scans, X-Rays and MRIs and can even lead to bone biopsies.
In the case of the CAT scans, he indicates that the test is really
only helpful in the case of a cancer recurrence because it also lacks
the sensitivity to determine if abnormalities are due to cancer.
According to him, in early diagnosis, what one needs to know about are
small points of spread that would be impossible to see without
surgery. He points out that the stage of cancers at detection is
typically T2 or T1 and that at that stage the incidence of spread is
very low.
After watching this I am postponing my bone scan and cat scans. I am
going to check with another practice here in town for a second
perspective, and I am very interested in the opinions here.
I know that Chodak is not in favor of systematic screening of men, but
this seems to be a consequence of his scientific principles that until
there is clinical proof of the value of a technique or procedure, one
can only act based on theory and conviction. I have been propelled
into acting on my cancer by a host of medical people that do not share
his point of view on screening and I guess I am glad of it. But now
that I am embarked on this process, I am trying to take seriously what
one of the members said: “You are in charge.”
Thanks again.
Stage T1a (one small point one sample in 12 samples: left apex)
Gleason 3+3
PSA 11
artf...@gmail.com
maintaining the tests:
1) My PSA is not what one would call low.
2) These tests will potentially serve as baselines for future tests.
3) Most doctors expect them and probably will not be happy until
they have them.
I.P. Freely
Plus ... why not?
A couple of scans will do no medical harm and may provide useful
information, including anything from a met precluding local treatment to
clear scans which may help you decide on local treatment. I'd sure
hate to have or refuse something as dramatic as RP or RT based on
statistics, especially if a scan could definitively rule them out (talk
about good news/bad news!)
But emerging studies indicate that those initial staging numbers Chodak
is talking about may indeed prognosticate our futures more accurately
than do PSA dynamics. I hope to learn more about those studies when I
visit my onc late this month; they were incomplete but promising last
time we talked.
I.P.
zero...@midsouth.rr.com
This response is not specific to the instant situation but general:
cost. Worthless tests cost millions if not hundreds of millions a year
in the U.S. And then we complain about health ins. premiums. We can't
have our cake and eat it too. Cost did enter into my decision to
forego SRT even though it was not I who would be [directly] paying for
it.
That said, I would not be surprised if artfer's docs insist on the
scans, at least in part due to defensive medicine.
Bill/Memphis
ron
In addition to Bill's point on "the cost to us all", some tests can
affect our well being. Some doctors are either unaware of these "side
effects" or choose not to discuss them. For example, it has been
reported by the National Academy of Sciences that "one CT scan exposes
a patient to the lower range of radiation received by some Nagasaki
bombing survivors. Up to one in a thousand patients will develop
cancer from this exposure. Sixty million CT scans a year will thus
cause cancer in thousands of people. Yet most consent forms are silent
about this." Yesterday, in a thread on Fosamax we were discussing how
the medical establishment is getting word out on cancer causing side
effect that may affect one in a million people. Apparently, the risk
with CT scans is 3 orders of magnitude greater, but the same medical
establishment has been pretty quiet on this issue...ron
alv...@gmail.com
> "Plus ... why not?"
>
> This response is not specific to the instant situation but general:
> cost. Worthless tests cost millions if not hundreds of millions a year
> in the U.S. And then we complain about health ins. premiums. We can't
> have our cake and eat it too. Cost did enter into my decision to
> forego SRT even though it was not I who would be [directly] paying for
> it.
>
> Bill/Memphis
"Cost did enter into my decision to
forego SRT even though it was not I who would be [directly] paying for
it. "
Thank you, from the bottom of my heart.
-Gordy
Steve Kramer
news:09b3935b-ff7b-416f...@o4g2000pra.googlegroups.com...
I'm a little suspicious of those expensive tests, but it seems fairly
universal that the doctors want them. Conversely, I never heard of Chodak
and don't know his qualifications.
I'd go with the tests.
--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum
I.P. Freely
>> "Plus ... why not?"
>
> This response is not specific to the instant situation but general:
> cost. Worthless tests cost millions if not hundreds of millions a year
> in the U.S. And then we complain about health ins. premiums. We can't
> have our cake and eat it too. Cost did enter into my decision to
> forego SRT even though it was not I who would be [directly] paying for
> it.
I agree with that ratipnale. I've even questioned PSA assays ($20 a pop,
once the blood is drawn anyway for other reasons) just a couple of
months apart for that reason, and canceled a CT when the idiot doctor
couldn't tell me what useful information he'd learn from it.
I.P.
I.P. Freely
> "Cost did enter into my decision to
> forego SRT even though it was not I who would be [directly] paying for
> it. "
I would not let cost deter me from potentially life-saving treatment.
Since I've earned and/or paid cash for my insurance, I'm not donating my
life to an insurance pool. If that were my paradigm, I'd just stop
paying for my commercial insurance, stop bothering the VA, give all my
money and home and possessions to charity, and lie back and let death
overtake me in some alley.
I ain't that selfless.
I.P.
toledo
Kramer" <skr...@cinci.rr.com> wrote:
> I'm a little suspicious of those expensive tests, but it seems fairly
> universal that the doctors want them.
Bone scans are not recommended unless PSA > 20 ng/mL or Gleason† >8 or
staged T3/T4. Art doesn't qualify as his PSA was 11 and his Gleason was 6 if
I remember correctly. Art should avoid a bone scan.
Pelvic CT generally are not recommended unless staged T3/T4. Id.
> I'd go with the tests.
If I were Art, I wouldn't.
I would also be concerned about doctors that put their financial interest
above the interest of the patient.
>
>
artf...@gmail.com
I have not canceled yet and the first apointment is bright and early
on Monday. I guess I could call in "sick" (ha, ha) if I develop a
conviction that I should not go through with it. I do not think that
my urologist is thinking about his wallet, but I guess I cannot know
that for sure. He does not even have privileges at the hospital where
the tests are taking place. I think there may be an infatuation here
with data, data, data, especially since for years, you had to wait
forever to get at some of these kinds of tests.
I appreciate the exchange.
Steve Kramer
news:349a2747-7ec9-4728...@v42g2000yqv.googlegroups.com...
Speaking of which, as I recall, we were expecting a report on June 9. We
may be two reports in arrears by now. How are you doing?
I.P. Freely
> it has been
> reported by the National Academy of Sciences that "one CT scan exposes
> a patient to the lower range of radiation received by some Nagasaki
> bombing survivors. Up to one in a thousand patients will develop
> cancer from this exposure. Sixty million CT scans a year will thus
> cause cancer in thousands of people. Yet most consent forms are silent
> about this." Yesterday, in a thread on Fosamax we were discussing how
> the medical establishment is getting word out on cancer causing side
> effect that may affect one in a million people. Apparently, the risk
> with CT scans is 3 orders of magnitude greater, but the same medical
> establishment has been pretty quiet on this issue
I'm often advised by my CT techs (I've had 8-10 CTs) of their hazard,
and have specifically asked them and some docs about it. Their response
is consistently something like "Yes, they're hazardous, but the
alternative -- overlooking an existing cancer or other suspected
significant threat -- is considered a bigger threat". It's a nearest
alligator sort of thing, not unlike RT for PC, which is suspected of
sometimes causing rectal cancer decades down the road.
OTOH, the CT I refused was looking for restricted sinus drain holes,
because I sometimes get sinus infections, mere nuisances as long as I
stay ahead of them. That particular doctor is a myopic idiot, yet
another example of why I encourage people to research their ailments and
question their physicians.
On top of that, Fosamax's downsides extend beyond ONJ and beyond its
slight risk of esophageal cancer (one of the worst cancers, I've read).,
not to mention that a majority of men our age have acid reflux our
outright GERD, which contraindicates Fosamax, rendering it ill advised
or unavailable as an anti-osteoporosis ADT crutch. And on top of THAT,
the PPI's we take for our GERD are coming under fire for their obvious
downside: our stomach acid serves several beneficial purposes, which
PPIs impair.
Just a few more examples of "can't win for losing".
Anecdotally and thus of no use to anyone, the CT I got looking for PC
mets before my initial treatment saved my life by finding a much more
virulent unrelated cancer. Sometimes we DO win one.
I.P.
Steve Kramer
news:C5843C6E.4E770%tol...@rmc.mc...
> On 1/2/09 8:55 PM, in article gjlrga$ori$1...@news.motzarella.org, "Steve
> Kramer" <skr...@cinci.rr.com> wrote:
>
>
>> I'm a little suspicious of those expensive tests, but it seems fairly
>> universal that the doctors want them.
>
> staged T3/T4. Art doesn't qualify as his PSA was 11 and his Gleason was 6
> if
> I remember correctly. Art should avoid a bone scan.
>
> Pelvic CT generally are not recommended unless staged T3/T4. Id.
>
>> I'd go with the tests.
> If I were Art, I wouldn't.
> I would also be concerned about doctors that put their financial interest
> above the interest of the patient.
They seem pretty universally recommended to me. I don't know who does not
recommend them, but they were recommended to me with a 16 PSA and T2a Stage
and 7 Gleason.
I.P. Freely
There is a flip side to consider. Since CT scans are the gold standard
for detecting recurrence of my more threatening cancer, I've had a few
of them since my dual cancer surgery ... all negative for any cancers
anywhere in my abdomen. Proof I'm clear? No, but quite reassuring, and
some hope that I might just make it until something better than SRT or
ADT comes along. I'm quite sure I'd accept any and every scan my oncs
could think of and approve before accepting PSA-based SRT or
asymptomatic ADT.
I do have some additional reassurance in that my oncs don't make a dime
off my cancer. Their VA time is paid by the day, not the disease, yet
their expertise comes from their university teaching hospital status ...
arguably the best of both worlds.
I.P.
I.P. Freely
> I like that, a good balance of opinions among the group.
> I appreciate the exchange.
I think that's one of the best advantages of this form of discussion. If
all we could access is one side of each issue, we'd blindly ride
railroads into all sorts of unjustified paths. I wish more people valued
valid, informed, well-considered decisions as highly as they value
peace and quiet.
They'll get plenty of peace and quiet after their cancer runs its
course; little point accelerating that by avoiding informative debates now.
I.P.
Steve Kramer
news:fd317f7d-95f2-47b2...@v5g2000prm.googlegroups.com...
>I like that, a good balance of opinions among the group.
That, sir, is an understatement. You are correct, though, about them. I
think the differences in opinions provides the essence of the assistance.
Alan Meyer
I found Dr. Chodak's opinions very interesting. Many doctors are
very careful to say nothing that could be construed as a
criticism of other doctors and their common practices. Chodak
however seems to be willing to speak against conventional wisdom
and went so far as to say that many doctors who order bone scans
aren't aware of the studies that show their inefficacy for
untreated patients with PSA under 20.
I also liked the way Dr. Chodak stated under what circumstances
he thought the tests were useful as well as when he thought they
were not.
I'm not qualified to have much of an opinion on whether he's
right or wrong. Unlike him, I haven't looked at reports from
these tests, wouldn't know what I was looking at if I did, and
haven't read the statistical studies that he cites to back up his
opinions.
One thing that he says that makes a lot of sense to me is that we
should ask questions about the tests before consenting to them.
Questions that he raises are:
1. What percentage of patients with my PSA, Gleason and staging
get true positive results and what percentage get false
positives?
2. If the result is positive what, if anything, should be done to
confirm that it is a true positive and not a false positive?
3. How will treatment change if there is a positive result?
4. What are the risks and side effects of the test itself?
If the doctor hems and haws and changes the subject, then he
probably hasn't got good reasons for ordering the tests and isn't
clear about how he'll use the results.
I have read that sophisticated medical imaging tests are one of
the two biggest money makers for hospitals, the other being
surgery. There are even some hospitals that decide who is
allowed to practice there based on the number of imaging tests
that they order. So buyer beware. A significant purpose of
these tests may simply be to extract money from the insurance
company.
Patients like tests. I always did. They make us feel like the
doctors are taking our problems seriously and really trying to
find out what's wrong with us. You get in that big MRI tunnel
and hear the banging sounds and feel the motion of the gurney and
think, yeah, this is more like it, now we're really going to find
out what the problem is and what to do about it.
But if Dr. Chodak is right and 130 bone scan patients out of a
thousand with a PSA < 20 get false positives compared to 3 with
true positives, then it sure doesn't sound useful to me.
I also agree with Ron's point. These tests are not completely
uninvasive. For some of them, significant amounts of radiation
are beamed through your body, or injected into it in the form of
radioactive isotopes. We don't really know the long term effects
of doing that, but it's something we don't want to do a lot of
without having a good reason.
Alan
rosbif
>If I were Art, I wouldn't.
...is that you safire?
artf...@gmail.com
Even if I do go through with the tests, I expect to have a spirited
debate with the doctor(s).
JohnSal
I'm very skeptical of the statistics at this point in determining what
tests are necessary. I have been treated for "BPH" for 10 years. I
am 51 now. I was told I was "too young" for it to be cancer. Now
that a DRE finally felt a tumor, it appears it was cancer all along.
So much for playing the odds. They were played in my case and I
lost. So now what? Who pays for the miscalculation? My wife and
kids, that who! Who will compensate them for the doc playing the odds
and being wrong? Who will pay our mortgage and for educating our kids
if I don't survive?
I am two days post diagnosis. Gleason 3+3=6, both lobes (T2c).
I have five kids and am in the prime earning years in a great job.
This really sucks!
ron
> So I hear the tests I have scheduled are bad. So what are good tests?
It would be inappropriate for me to say that a test is good or bad for
you. I think most here have simply stated some pros and cons about
specific tests, with that information you can make a decision about
the tests that is right for you.
As far as tests that might be useful, IMO, an endorectal MRI by one of
the following
John Kurhanewicz, Ph.D.
Associate Professor of Radiology
Director of the Prostate Imaging Group and Biomedical NMR Lab
China Basin Molecular and Functional Imaging Center
Department of Radiology
University of California San Francisco
185 Berry, Suite 377
San Francisco, CA 94143-0946
Tel: 415 353-9410
Fax: 415-353-9423
E-mail johnk at cash.ucsf.edu
Chris Sotto (415-353-9452) for scheduling
Peter Scardino MD
(212-639-7955)
Memorial Sloan Kettering
NYC
or a color doppler ultrasound by one of the following
Duke K. Bahn MD
Medical Director, Department of Radiology
Prostate Institute of America
Community Memorial Hospital of San Buenaventura
168 N. Brent Street, Suite 402
Ventura, CA 93003
888-234-0004
805-585-3082
Fax: 805-641-3965
dkbahn at cmhhospital.org
Katsuto Shinohara MD
1600 Divisadero Street, 3rd floor
UCSF
San Francisco, CA 94115
Tel:415-353-9877 (assistant Mary)
Fax:415-476-8849
kshin...@urol.ucsf.edu
Fred Lee, MD
Crittenton Hospital
1135 W University Dr, #420
Rochester, MI 48307
(248)650-4699
would provide information that you and your doc could use to better
characterize your PCa. If you haven't already had your biopsy slides
reread by an expert PCa pathologist, that would also be worth doing.
Baseline 25(OH)D3 and bone mineral density tests would also be useful
(many men with PCa have low calcidiol and require supplementation, and
are prone to low bone density)...ron
I.P. Freely
John, that doctor is as dumb as mine was about cancer. Find another one
now. In fact, after reading a few PC books, consult at least two
oncologists, one or more each for radiation and surgery. Note I said
"after" reading a few books; that's so you'll recognize an idiot
oncologist, examples of which we hear about here several times a year.
OTOH, with a Gleason 6 T2c at age 51 you're probably more likely to miss
a month of your career than a year or decade of it. Take some work home
with you or telecommute if you get surgery, go to work an hour late for
five weeks if you get external radiation, or just smile and sit and walk
carefully at the office if you get seeds. Don't start worrying much
about anything worse (except maybe trying having more kids or trying to
avoid same) until you see proof your first treatment was only a
rehearsal. Just do not -- I repeat: DO NOT -- base your treatment choice
on those near-term work impacts. A few hours, days, or even weeks
devoted to treatment now will not matter as much to your income or old
age activities as will the medical decision you make. i.e., go for the
optimal cure, not near-term convenience, if the two are at odds (I
haven't read a chapter on seeds for many years now, but I'm GUESSING
they will be a prime candidate). And even if you chose against all
advice to just watch your cancer grow, you may still have the privilege
and pleasure of paying off your mortgage and educating your youngest
offspring unless your staging numbers increase upon closer inspection.
Besides, beyond employer-matched IRA and/or 401-k funds, your best
investment right now is probably that mortgage. Nothing else I can find
beats its guaranteed 3-4% return after taxes right now, except that it
doesn't directly pay tuition any time soon.
It still sucks, but if we're gonna get any cancer worse than a simple
rogue mole, this is the one to get.
I.P.
Steve Kramer
news:49929daf-7edb-4cdb...@q30g2000prq.googlegroups.com...
> So I hear the tests I have scheduled are bad. So what are good tests?
There are some who believe them to be unecessary and expensive. There are
very few that believe them to be bad. Personally, mine found nothing, but
then again it appears there was nothing to find outside the prostate.
> I'm very skeptical of the statistics at this point in determining what
> tests are necessary.
I think you will also find here a universal belief that statistics are very
interesting, but of little value when it comes to YOUR cancer. No one can
know on which side of a 80/20 split they are sitting.
> I was told I was "too young" for it to be cancer.
My father was told that when he was 40. He was diagnosed at 42 and died at
50. I was told that at 46, but it was euphamistically. Of the 900 or so
people I have seen come and go in this NG, 117 were 50 YOA or less. 50 were
my age or less. 13 were 41 or less. Clearly, one can get prostate cancer
at your age.
> So now what? Who pays for the miscalculation? My wife and
> kids, that who! Who will compensate them for the doc playing the odds
> and being wrong? Who will pay our mortgage and for educating our kids
> if I don't survive?
First, you may be jumping to a wrong conclusion. It is possible that you
had no cancer and now you do have cancer.
Second, you may be too fatalistic. With a Gleason 6, assuming no
penetration through the prostate (which would be a T3 or T4), you have a
really good shot at beating the bastard. Furthermore, surgery will cure
whatever prostate problems you have had in the past.
Third, if you do have cancer and find it is out of the barn, then I will
invoke myself as an example. I was 46 when diagnosed and my Stage is T3. I
had three kids and was in the prime earning years in a great job. Eight
years later, my kids are married, I have eight grandchildren, and I will
retire at the end of this week having made enough to take care of my wife
when I assume room temperature.
This disease sucks, but it does not instantly end your life.
Sue Mullen
JohnSal wrote:
> I am two days post diagnosis. Gleason 3+3=6, both lobes (T2c).
>
> I have five kids and am in the prime earning years in a great job.
> This really sucks!
Kevin, my husband was dx last march just a few days before his 65th
birthday. He was gleason 9 in all 12 samples and he had 44 sessions of
IMRT, plus he is taking Lupron shots for three years.
He arranged to have his radiation treatments late afternoon so he could
put in an almost full day of work. During this time he missed one hour
of work each day and took maybe 2 or 3 other days off from work.
Although the Lupron shots are leaving him more tired, he is still
working full time and has 3 more years untill he can retire.
Good luck to you and everyone else here.
sue
I.P. Freely
> "JohnSal" wrote
>> I'm very skeptical of the statistics at this point in determining what
>> tests are necessary.
>
> I think you will also find here a universal belief that statistics are very
> interesting, but of little value when it comes to YOUR cancer.
I and many others here believe just the opposite, but I think we're
talking semantical differences. Statistics are invaluable in determining
our chances of this or that or the other result from any standard
treatment, and in predicting whether a test is warranted, but not in
PROVING either. i.e., just as we should attribute hoofbeats to horses,
not zebras or wilderbeests, unless we're in he Serengeti, we should
assume that our response to a treatment or need for a test is median or
average, not third sigma (i.e., very rare).
I.P.
Steve Kramer
news:rbg8l.32928$mE3....@newsfe14.iad...
I guess I will rephrase that.... You will find here an almost universal
belief...
Sometimes, statistics are very useful when deciding on a treatment. For
instance if surgery is 87% successful and radiation is 84% successful and
cryo is 50% successful and drinking urine is 0% successful, most people will
opt for surgery or radiation. [[ btw, those are purely made up
statistics ]]. However, what you will find is almost everyone here
understands that when it comes to YOUR cancer, YOUR body, YOUR doctor, etc.,
there is no way of knowing if you will be in the 87% or the 23% when you
come out of the surgery.
I don't think that applies so much to something like which tests to try. If
there is only a 50% chance of a test successfully finding cancer, you're
still likely to take that chance.
toledo
Kramer" <skr...@cinci.rr.com> wrote:
Indeed, there is no way of knowing. But in determining the appropriate
treatment or test, is there any alternative to the probabilities suggested
by IP? Should patients always assume they are Talib's Black Swan?
>
> I don't think that applies so much to something like which tests to try. If
> there is only a 50% chance of a test successfully finding cancer, you're
> still likely to take that chance.
I don't think that percentage applied to Art's tests.
>
>
artf...@gmail.com
> This really sucks!
I do not have as many kids, but I can say that I myself played the
odds with my doctor. She did not freak out when my PSA rose, and I
did not act as quickly as I should to get an ultrasound to see if my
prostate was enlarged. The ultrasound was negative, but I should have
gotten a urologist visit and biopsy sooner. As it is with the slow
progress of prostate cancer, I may still have time to get this thing
cut out via surgery.
I am still in a similar state of mind, because, the corollary to
common wisdom that "all men have some prostate cancer" by age 50 +
multineedle biopsies is that if you put yourself in the care of the
best modern medicine provides, you are going to get diagnosed sooner
or later with prostate cancer. And if it is true that most men have
died with their prostate cancer rather than because of it, it must be
equally true that many men have had prostate cancer removed that would
not have killed them. It sucks getting older now that the warranty
has expired.
One thing I found out in spades is that no one cares like you do about
your cancer. Lots of people are going to be more or less
inconvenienced or devastated by your demise, but nobody will ever do
as much about it as you will. Every one of the kind people who have
written me have always asked, "What are you going to do about it." I
do not think this is just repeating stuff or trying to be helpful. In
some ways, I perceive it to be because they know that if I am not
pretty frosty about this matter, it could get ahead of me (assuming it
is not ahead of me already). So this business about the tests and
many of the other points debated so helpfully here are still important
because, just walking through the medical agenda can be a big
diversion. A lot of good urologists seem to be saying that once you
have the core numbers (PSA, Gleason, and stage, you are not getting
any smarter. Basically, the cancer risks are better known than after
you have the "other tests". You still have to decide surgery or
radiation or something else, and you are poorer and later in the game
for your troubles if you have too many tests.
I was asking the question about whether or not I need a bone scan and
CAT scan before making treatment decisions, and a lot of people say
no. Both Dr. Chodak (as seen in the videos cited in the first post)
and many people in this thread or that wrote me personally. I got the
damn bone scan which was clear and canceled the CAT scan.
In Andy Grove's wonderful account of his own decision, he indicates
that he planned to get a prostatectomy unless his cancer was
unconfined. He "found out" that it was not and chose a unique
radiation therapy.
I imagine that the chairman of Intel Corporation was not working with
the low end of the business, but based on the third video I cite by
Dr. Chodak, how was he sure his cancer had escaped the capsule?
Even the MRI seems like dowsing. I hear about all kinds of people who
can tell you where to dig for water using a dowsing stick, but I'll be
damned if I am going to stake my decision on a potentially flaky test,
especially if I cannot get it done by one of the Jedi that RON talks
about.
I am going to get a second opinion on my biopsy, but I guess that now
I have had a cancer siting, there is no going back. People I read
about on active surveillance get a biopsy a year. That is not for me.
I am looking at the people locally who might do a good job with
surgery. I do not like what I see in the surgery write-ups, but I bet
that the oddsmakers will not let me rest easy using the other route.
I am working now and have insurance. After I retire, I would like to
minimize the drugs and treatments I have to negotiate on a fixed or
decreasing income. Sometimes you are not so lucky as to get it all,
but I have the sense that the sooner you cut out the walnut, the
better once you know you are going to do something, even it it does
mean you risk accelerating the onset of old dudedom.
One thing I have to sort out now is whether I go open or laproscopic.
The issue is whether they can see enough to take out everything that
needs to come out. Chodak is cool about this technique because there
are no no-term studies (at least that he considers conclusive). I
also understand that he is a fine open surgeon himself so that may
curb his enthusiasm.
Man, I went through a really bad patch about two weeks ago not wanting
to sleep because I could not get the idea out of my head that I would
just shut off. Cease entirely. Black. I have gotten a bit of a grip
since. Aside from spending a good deal of time thinking about my life
and my Maker. (That's getting hard now because the Daily Show just
came on.) The main thing that has happened is that I have finally
started to read all the crap I should have read about 10 years ago.
It does not change the fact that I got cancer, but it does help me
feel like I am steering this again. I have started looking for a new
doctor. (I bet urologists expect that in a high percentage of
patients.) It has helped me feel more like fighting this, and I think
that means I am going to keep butting heads with medical handlers as
well.
Believe me, I am sorry anyone gets this, maybe even more so someone
with kids and earlier in their career even than I am, but I am using
the thought to help me remember to make an appointment with another
urologist tomorrow to try to move my own case along.
Good luck and Godspeed.
Art
- Age: 55yrs and newly diagnosed (Dec 16 or thereabouts)
- PSA 10 - 12
- T1c (? my urologist felt nothing, but the PC is in the apex) Gleason
6 on 1.5 mm (1 out of 20 samples, total length unknown)
- General Health = good, moderate exercise, very rarely sick (colds,
flu, etc)
- Prostate: 24 gms based on ultrasound volume
- Non-smoker- Previous surgery = wisdom tooth removal under general
anesthesia
I.P. Freely
> nobody will ever do as much about it as you will.
One common exception to watch out for is doctors who insist we fire a
shotgun (multiple treatments) at our disease just in case one treatment
doesn't work, to maximize our life span and/or prevent law suits.
Sorry, dudes, but there's more to my life than span. Let's talk.
> A lot of good urologists seem to be saying that once you
> have the core numbers (PSA, Gleason, and stage, you are not getting
> any smarter.
> cancer risks are better known than after you have the "other tests".
A new emerging study supports that, according to my onc whom I see later
this month; it's on my list of questions. The exceptions there, of
course, are individuals whose extra tests blow the statistics by finding
new and decision-changing data such as a met the Partin tables don't
expect.
> many people ... that wrote me personally.
That always raises a red flag on my screen. Just like "some guy's claim"
or any non-peer-reviewed "study", personal advice on something as
important as cancer is highly suspect no matter whom it is from. Even
the smartest, best-informed person here, no matter who that may be, has
known and unknown biases which taint his/her advice, even his/her
selection of "facts". Tread very lightly on any advice or facts obtained
that way about cancer or about other posters here, and wonder why
they're working behind the scenes where peer/forum review is non-existent.
> I am looking at the people locally who might do a good job
Some advise seeking big-name oncologists even at great distances, others
prefer to go local for easy long-term access. Both have merits so my
compromise was to pick a trusted expert within acceptable driving
distance. My town of 150,000 has many cancer specialists, and I
consulted with several. The first one who really impressed me was a
three-hour drive away in a major city with several major cancer centers
sharing resources and knowledge. I've really appreciated having that and
my chosen onc close enough for frequent, easy personal consultation.
We've driven there > a dozen times now, and have been very glad it is a
drive rather than a flight away. Could a world-famous healer have cut or
advised me better? I don't know, but I certainly wouldn't have spent as
much time with him before and since my treatment as I have with my guy,
a highly experienced and professionally well-recommended product of
Memorial Sloan Kettering.
> I am going to keep butting heads with medical handlers
I think that's good, as long as it's productive and based on knowledge
and personal priorities, as opposed to irrational resistance. You don't
seem to be the lateral type. In virtually all of the 12-15 significant
issues I've butted heads with > 20 physicians about over the decades,
they acknowledged I was right, often to the extent they included my
analysis in my official medical records and changed diagnoses and/or
treatment protocols triggered or even based on my analysis. The numerous
reasons are simple and clear:
1. I read more about my own medical problems than most of them do.
2. I live with my body every day; they see me for 10 minutes a year, an
hour if it's serious, hours for my PC.
3. I have more at stake than they do.
4. I know my own priorities infinitely more closely than they do.
5. I'm my only patient, and can and will spend whatever time is required
to cure me of an important problem.
6. I'm more open-minded than they are, partly because I knew nothing
about my problems before they became problems and partly because even my
ego is smaller than theirs.
The rewards of being informed and assertive have been absolutely
immense, especially when I add the dozens of other professionals I've
butted heads with throughout the last 60 years. Facts, logic, and
backbone are invaluable allies, especially when presented with your
level of articulateness and thought.
At some point, in some cases, wrapping those around a baseball bat
becomes necessary if the stakes warrant it.
You'll do fine.
I.P.