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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2004

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Good lab report

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Stephen Jordan - 28 Dec 2004 23:25 GMT
As those who have waded through my complaints about the botched
cryosurgery of 11/03 and the numerous diagnostic tests that my former
urologist failed to order may recall, I recently went through a course
of IMRT and am presently on ADT.

Contrary to my rad onc's advice, and because I followed my own advice
published here, I consulted a med onc a couple of weeks ago.

Thank God.

I had demanded and gotten a DXA (or DEXA) bone mass density test. It
disclosed, as previously reported, that I had pre-existent osteoplasia,
a precursor of osteoporosis, a common SE of ADT. My rad onc didn't think
of it. I could have suffered a catastrophe if I had not done my homework
and taken the initiative.

I'm now, thanks to the med onc, on the bisphosphonate Actonel 35mg q
weekly, plus 1000 mg calcium and 200 mg vitamin D qd. This regimen,
which will continue so long as I am on ADT, will prevent osteoporosis
and such fun things as pathological vertebral fractures.

The med onc (well, OK, I'll publish her name: Sharon M. Ondreyco MD,
Palo Verde Hematology and Oncology, Scottsdale, Arizona) also ordered
six months of "ultrasensitive" PSA tests, plus a new testosterone assay,
and a prostatic acid phosphatase (PAP) test.

Now, I have the results:

PSA: 0.03 ng/dL (the rad onc's "regular" PSA test = 0.1 two weeks prior)

Testosterone: <20 ng/Dl, as it should be on ADT. I dunno why the lab
didn't report a definite number. Previous report = 36 ng/dL, which, as
my rad onc assured me after I complained about it, *some* clinicians
consider to be, er, good enough.

And, to top it off, PAP = 0.8 ng/mL. According to the literature I've
seen, a baseline PAP test enables one to assess the liklihood of PSA
recurrence post-treatment. A *baseline* PAP result of <3.0 indicates a
low probability. So the report is very good; better than I expected.

The uro who botched the cryo never thought to order this vital
diagnostic test in September 2003, when all this was starting, and I was
too ignorant to demand it. I learned about it from Stephen Strum's _A
Primer on Prostate Cancer_. I had thought that, because I had undergone
primary treatments, it was too late for the PAP test to be useful, but
Dr. Ondreyco believes otherwise. Fine by me; I haven't caught up to her
yet ;-)

There is a number of other diagnostic staging tests that were not done,
and that it is now too late to do.

Brothers, we must take charge of our cases. Our medics have many, maybe
hundreds, of patients to follow. We each have just one. The conclusion
is obvious.

Regards,

Steve J
c palmer - 28 Dec 2004 23:39 GMT
Brothers, we must take charge of our cases. Our medics have many, maybe
hundreds, of patients to follow. We each have just one. The conclusion
is obvious.
Regards,
Steve J
=================

hi steve - you have summarized what i've been saying all along.  great
testimonial.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc
Clarence Crow - 29 Dec 2004 00:59 GMT
>As those who have waded through my complaints about the botched
>cryosurgery of 11/03 and the numerous diagnostic tests that my former
>urologist failed to order may recall, I recently went through a course
>of IMRT and am presently on ADT.

I haven't followed it all as I just found this ng, Oct/Nov, 2004.
Since then, the key players have emerged.

>Contrary to my rad onc's advice, and because I followed my own advice
>published here, I consulted a med onc a couple of weeks ago.
[quoted text clipped - 6 lines]
>of it. I could have suffered a catastrophe if I had not done my homework
>and taken the initiative.

As a part of my pre-qualification to get into the Clinical Trial I'm
in, I had a week of exhaustive Tests, (none of which, my Uro
recommended). Amongst those was a Bone Density Analysis to provide
some of the Data to be fed into the Computer. Apparently, I was OK on
this and NOT randomised into Group 2, where bisphosonate, calcium and
additional Vitamins are run concurrent to the ADT.

>I'm now, thanks to the med onc, on the bisphosphonate Actonel 35mg q
>weekly, plus 1000 mg calcium and 200 mg vitamin D qd. This regimen,
[quoted text clipped - 5 lines]
>six months of "ultrasensitive" PSA tests, plus a new testosterone assay,
>and a prostatic acid phosphatase (PAP) test.

I'll certainly enquire about this and any other "ground breaking"
developments on my next visit to the Clinic, Jan 24, 2005  

>Now, I have the results:
>
[quoted text clipped - 9 lines]
>recurrence post-treatment. A *baseline* PAP result of <3.0 indicates a
>low probability. So the report is very good; better than I expected.

<snip>

>Brothers, we must take charge of our cases. Our medics have many, maybe
>hundreds, of patients to follow. We each have just one. The conclusion
>is obvious.

I'm not impressed by my Uro or the Female Rad Oncologist, he referred
me to. On our first consultation, she didn't even have a copy of my
Biopsy Report, plus she was going to send me to a 2nd rate Clinic.

It was thru meeting a fellow aussie in this ng, I managed to change
horses at the last minute and get into the Clinical Trials program at
SCGH, Perth (he was in it in the Bone Density group, and we spoke by
landline).

If I didn't grab this option, I'd be on the beach.

Fighting all the way is mandatory, to the point of being obnoxious!!

Well done !!

-- Reader to complete...
-- Please reply to this ng as my email adress is fake:

-- Regards

-- CC
Stephen Jordan - 29 Dec 2004 01:32 GMT
On december 28 (in Arizona) Clarence Crow responded to me, in pertinent
part:

> Fighting all the way is mandatory, to the point of being obnoxious!!
>
> Well done !!

I thank CC.

/preach mode on/

We are all in a struggle for our very lives. And I include those who
have good short-term numbers on their RPs. The long-term recurrence rate
is nothing about which to brag.

It is war, and in order to prevail we must know the disposition of our
enemy. There is no way to obtain such knowledge except through
diagnostic and staging tests, aka intelligence. AIUI, many of our
primary medics, especially the common or garden variety urologist, are
ignorant of many of the intelligence-gathering methods.

It follows, therefore, that we must study, learn, take charge.

/preach mode off/

Regards,

Steve J
__
"No man is an Island, entire of itself; every man is a piece of the
Continent, a part of the main; if a clod be washed away by the sea,
Europe is the less, as well as if a promontory were, as well as if a
manor of thy friends or of thine own were; any man's death diminishes
me, because I am involved in Mankind; And therefore never send to know
for whom the bell tolls; It tolls for thee."
-- John Donne

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