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

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Father in law; gleason 5+5 PSA 18

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Clive R - 28 Jan 2004 09:32 GMT
My father in law had an elevated PSA reading of 18 at his last regular
test about 6 weeks ago. two years ago it was 4 and one year ago it was
5 (but alas no advice to get further check up).

He has had xrays and nuclear medicine scans to check for metastasis
but that looked Ok. finally had the biopsy (had to come off his blood
thinning tablets for a spell first)

biopsy shows a gleason score of 5+5. Cancer in all 8 specimens i
believe.

This looks like a very serious situation from everythign i can read
about prostate cancer,  and clearly if it has gone outside the
prostate itself then he should be put onto hormonal treatment and
radiation therapy. Am i correct?

we have been referred to another specialist but the appointment is feb
10th. i find this absurd when the cancer is clearly aggessive, so i
guess tomorrow we start pushing for more rapid action.

Any other advice  the group can offer?  I had no idea the result would
be so serious, but i prsume there is still hope. he shows no signs of
illness and in all respects we considered him as fit as a fiddle.
Strong man, healthy history and 63 years old.
Louis V. Spielman - 28 Jan 2004 09:43 GMT
My PSA was 20.7, my biopsy came back at 4+5 with about 20 samples. Bone Scan
and MRI/MRSI negative, biopsy found extension into the seminal vesicles.

I was immediately placed on Lupron. @ months later I started 5 weeks of 3D
conformal EBRT followed by 2 High Dose Internal radiation treatments. That
finished 1 3/4 years ago. MY PSA is now 0.03 and I am scheduled to go off of
Lupron in March.

Your father should be placed on HT as soon as possible.

> My father in law had an elevated PSA reading of 18 at his last regular
> test about 6 weeks ago. two years ago it was 4 and one year ago it was
[quoted text clipped - 20 lines]
> illness and in all respects we considered him as fit as a fiddle.
> Strong man, healthy history and 63 years old.
c palmer - 28 Jan 2004 10:36 GMT
i agree with louis - there's absolutely no reason why he can't go on
lupron right away.  then let the lupron do it's job and shrink the
tumors - then hit it with radiation.  i at a lost as to why they are not
acting on it faster knowing his gleason score and psa.....but that's me.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
Leonard Evens - 28 Jan 2004 13:51 GMT
> My father in law had an elevated PSA reading of 18 at his last regular
> test about 6 weeks ago. two years ago it was 4 and one year ago it was
[quoted text clipped - 15 lines]
> 10th. i find this absurd when the cancer is clearly aggessive, so i
> guess tomorrow we start pushing for more rapid action.

I am not a physician, but it is my impression that even very aggressive
forms of prostate cancer are relatively slow growing, in comparison to
other cancers.   That is why the usual kind of chemotherapy, which
attacks rapidly growing cells, doesn't work very well.  It would
certainly seem advisable to start hormone suppressing therapy fairly
soon, but a couple of weeks may not make any difference.

Since the people here, including me, are not physicians, you should
really check with medical experts about such matters.

> Any other advice  the group can offer?  I had no idea the result would
> be so serious, but i prsume there is still hope. he shows no signs of
> illness and in all respects we considered him as fit as a fiddle.
> Strong man, healthy history and 63 years old.
Alan Meyer - 28 Jan 2004 18:55 GMT
> > My father in law had an elevated PSA reading of 18 at his last regular
> > test about 6 weeks ago. two years ago it was 4 and one year ago it was
[quoted text clipped - 25 lines]
> Since the people here, including me, are not physicians, you should
> really check with medical experts about such matters.

It's true that it is slow growing.  But there must be some specific
point when the first distant metastasis establishes itself, after which
the disease becomes terminal.  I agree with the alarmists.  Why
not at least start HT immediately.

One of the awful problems of medical treatment is that it is done at
the leisure of the medical establishment.  If they have a reason to
consider something not an emergency, then it's okay to not worry
about it for two weeks.  Why should they worry?  Nothing bad will
happen to them.

Me, I'd be worried.

The usual procedure is to start Casodex or equivalent anti-androgen
pills to immediately suppress testosterone.  Then in a week, get an
injection of Lupron or equivalent for long range hormone suppression.

Radiation would follow some time after that.
Danny McCarty - 01 Feb 2004 01:44 GMT
>Subject: Re: Father in law; gleason 5+5 PSA 18
>From: "Alan Meyer" ameyer2@yahoo.com
[quoted text clipped - 49 lines]
>
>Radiation would follow some time after that.

The doubling time is about 9(nine) months, and if there are any mets they are
not yet large enough to be visible on the scan.  Radiation to the prostate and
bed might get what is there.  The hormones may make the cancer more susceptable
to the radiation.  
 Lupron causes a testosterone surge before it causes the testosterone to drop
below castrate levels.  The Casodex is used to block the PCa's use of
testosterone until the surge is gone.  I used Casodex and Proscar for 18 months
before anyone told me to stop... long after the PSA had dropped to below 0.5
Steve Kramer - 28 Jan 2004 18:35 GMT
First, he needs to read Dr. Patrick Walsh's Guide to Surviving Prostate
Cancer.  If you are helping him in his decisions, you should read it too.  I
will give you a small blurb on what you will find it the book.

The biopsy results are extremely serious.  5+5 is as high as it gets for
Gleason.  However, PSA 18 isn't all that far afield.  Mine was 16 and I'm
still here.

If the nuclear med scan was a bone scan and if it was negative, he might
have dodged that bullet... at least for now.  With a 5+5=10 Gleason, I
suspect that a prostatectomy is not going to be offered him as a viable
solution.  Given that, I suspect that a combination of radiation treatment
(RT) and hormone treatment (HT) will indeed be offered.

RT will reduce to a negligible amount the PCa in his prostate and prostate
bed.  HT will ordinarily reduce almost all PCa cells in his body.  HT will
often work for a few years then go "refractive".  Then more aggressive
treatments will be needed.

I am very sorry for you and your father and the rest of your family.  This
is a bitter pill to swallow for everyone involved.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

> My father in law had an elevated PSA reading of 18 at his last regular
> test about 6 weeks ago. two years ago it was 4 and one year ago it was
[quoted text clipped - 20 lines]
> illness and in all respects we considered him as fit as a fiddle.
> Strong man, healthy history and 63 years old.
Alan Meyer - 29 Jan 2004 03:39 GMT
> RT will reduce to a negligible amount the PCa in his prostate and prostate
> bed.  HT will ordinarily reduce almost all PCa cells in his body.  HT will
[quoted text clipped - 3 lines]
> I am very sorry for you and your father and the rest of your family.  This
> is a bitter pill to swallow for everyone involved.

It may not be necessary to swallow the pill yet.  With no evidence of
metastasis, it's possible that the disease has not spread and can
still be cured with radiation.

That's why I urge Clive to get his father-in-law on HT ASAP.  That
will slow or temporarily stop the progression of the disease and
give everyone some time to work out a treatment plan.

  Alan
Steve Kramer - 29 Jan 2004 10:49 GMT
Forgive me if I came across that this was a fatal scenario.  The "bitter
pill" that I meant was the cancer, not impending, iminant, or otherwise
irreversible death.

Clive:  I hope to clarify.  With modern medicine, you father has an
excellent outlook for years of living and a good to fair outlook to see 70.
Other than that, we all wait for a cure that might come in 5-10 years.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

>
> > RT will reduce to a negligible amount the PCa in his prostate and prostate
[quoted text clipped - 14 lines]
>
>    Alan
Clive R - 30 Jan 2004 07:50 GMT
thanks for trying to reassure steve...i think i understood your
language....but i guess you have to be careful when emotions are
running high.

> Forgive me if I came across that this was a fatal scenario.  The "bitter
> pill" that I meant was the cancer, not impending, iminant, or otherwise
[quoted text clipped - 24 lines]
> >
> >    Alan
Clive R - 29 Jan 2004 11:23 GMT
Thanks Alan and others

We've been working the phones and using connections to find an
alernative specialist.

We think we are going to get something tomorrow.

Lets hope we can get him on some form of treatement asap.

thanks for your time in responding.

> > RT will reduce to a negligible amount the PCa in his prostate and prostate
> > bed.  HT will ordinarily reduce almost all PCa cells in his body.  HT will
[quoted text clipped - 13 lines]
>
>    Alan
John Ruggiero - 29 Jan 2004 20:17 GMT
Where do you live?

Here's my Uro: Dr. Douglas Dahl, Massachusetts General Hospital
617-726-0875.

I'm sure Lisa (Dr. Dahl's assistant) will help you find a good person for
your Dad wherever you live. Say Hi to her for me.

-john

> Thanks Alan and others
>
[quoted text clipped - 24 lines]
> >
> >    Alan
Outlivecancer - 29 Jan 2004 22:53 GMT
Hi, I am sorry to hear about the results.It is a shock and that's why
2nd.opinions and info gathering are so important.The first suspect I have is
usually hmo slowness and wastefulness.There is a MAGIC word to use with HMOS
it's called FIDUCIARY
as in a fiduciary duty,works wonders.On a less angry note is the possibility
that they
are not being clear.My uro-surgeon the dinosaur,opted for RP w/a Gof 3+4 that
turned into 4=3,less serious than your dad's but I am not a dr. and anything
that breaks out is serious, anyway my doc insisted we wait 3weeks plus for a
clear surgical field.Seems like biopsies do damage themselves and surgeons need
clearing to operate although again the high of 5and 5 make make this piece moot
for RP.God Bless.
Clive R - 30 Jan 2004 07:47 GMT
thanks everybody

just to be clear, we are in sydney australia. We fortunately
(unfortunately?) have a geat network of specialists in various
disciplines, as my wife has had a lot of medical challenges hereself,
over the last couple of years, and we are well covered with private
insurance. So we've leveraged friendships with various doctors and
their one degree of separation with the appropriate specialists.

.... result? after working the phones we've got an appointemtn with
someone we know to be a very well respected expert in the field, and
the appointment's on Monday next week, so only two days to wait.

i'll keep you informed.

> Hi, I am sorry to hear about the results.It is a shock and that's why
> 2nd.opinions and info gathering are so important.The first suspect I have is
[quoted text clipped - 8 lines]
> clearing to operate although again the high of 5and 5 make make this piece moot
> for RP.God Bless.
Psillyme - 30 Jan 2004 04:22 GMT
I am 43 years old and was diagnosed with prostate cancer in mid
November 2003.  My PSA was only 5.4 & the urologists were treating me
unsuccessfully for prostatitis and an obstructed urinary tract.  I had
to have a catheter put in in order to function. It was only by my
insisting that they do the biopsy that my cancer was found.  The
doctors were flabbergasted when the results came back as they were
just humoring me because they felt I was being paranoid.  The Gleason
score came back 5+4 and all twelve biopsy samples were totally
cancerous.

He immediately started me on monthly lupron injections and casodex
tablets daily.  Then came the CAT scan and the bone scan, neither of
which showed any detectable metastasis outside of the prostate area.

Next I met with three specialists at Duke University Hospital; an
urologist, oncologist, and radiation oncologist.  They determined my
cancer is inoperable and my best treatment option is to continue the
hormone therapy for three years and have eight weeks of targeted
radiation after three months of the hormone therapy.  Seed Implant
Radiation Therapy is not recommended for cancer this advanced.  There
was some discussion of a round of more traditional chemotherapy
following the hormone therapy as a prophylactic measure as opposed to
waiting for the cancer to recur metastatic, but no firm conclusion as
there is no clinical evidence as yet determining if there is any
benefit.  Clinical trials are still being done.  Then I met with the
local radiation oncologist and set up the radiation therapy schedule
at the local hospital after he consulted with the Duke doctors.

After two months of the hormone therapy I noticed a difference in how
the prostate area felt (especially when sitting on a firm surface) and
asked the urologist if the catheter could come out.  He seriously
doubted it but said it certainly wouldn't hurt to try.  I've now been
free of the catheter for a week and a half.  The first couple of days
I had serious doubts as to whether I was going to leave it our as I
had NO bladder control whatsoever.  With the aid of Ditropan XL I was
able to retrain my bladder with pretty good and have had no
"accidents" after the third day.  I still wear the Depends
undergarments when I know I will be away from convenient restrooms but
have been lucky so far and only had a couple of close calls.  I start
the radiation on March 20, 2004.  I am somewhat concerned about the
possibility of radiation damage to the nerves responsible for erectile
function, but those chances are considerably less than they are for a
radical prostatectomy.

I suspect that your father-in-law's treatment will be similar sans
catheter.  Hormone treatment in conjunction with radiation therapy is
the current state-of-the-art.  I was offered two forms of radiation.
The more traditional targeted radiotherapy and new high-yield rod that
is implanted for twelve hours and then removed, followed by a short
series of targeted radiation.  The down-side to that is you basically
have to be isolated for a couple of weeks afterwords and cannot be
around children as you are radioactively contaminated.  I chose the
more traditional approach since the other option left me feeling
"dirty" (pun intended).  I don't see that the delay in starting the
hormones should be of any concern, but I'm not a professional.  I am,
however, glad my urologist took the aggressive approach and started me
on them immediately.

I've been really lucky so far with the hormone treatments.  The only
side-effect I have noticed is hot flashes.  I still have to make sure
I get extra calcium because long-term hormone therapy can cause
calcium depletion and osteoporosis.

Dr. Walsh's Guide to Surviving Prostate Cancer is indeed an excellent
resource.  He's one of the nation's foremost authorities on the
subject.  Another good book is "Prostate & Cancer: A Family Guide to
Diagnosis, Treatment, & Survival" by Sheldon Marks, MD.  Both of these
books can be found on half.com or ebay.com for considerably less than
the bookstore price (I never pay retail price if I can help it).  Here
is a wonderful web site where one man tells of his experiences living
with prostate cancer:  http://tinyurl.com/2wcnv

Good luck to your family.  Be part of a good support system for your
father-in-law.  Encourage him to talk about his experiences and keep a
daily journal.  Seek out a local prostate cancer support group and go
with him.  Help him to keep his faith and his sense of humor.
Encourage him to get his church involved and pray for him.  If he
becomes depressed, encourage him to talk to his doctor about his
depression.  Two key words for your entire family and friends:
Encourage and Support.

Kenny Ellenburg
Stanly County, NC

> First, he needs to read Dr. Patrick Walsh's Guide to Surviving Prostate
> Cancer.  If you are helping him in his decisions, you should read it too.  I
[quoted text clipped - 42 lines]
> > illness and in all respects we considered him as fit as a fiddle.
> > Strong man, healthy history and 63 years old.
Steve Kramer - 30 Jan 2004 11:33 GMT
> I am 43 years old and was diagnosed with prostate cancer in mid
> November 2003.  My PSA was only 5.4 & the urologists were treating me
[quoted text clipped - 5 lines]
> score came back 5+4 and all twelve biopsy samples were totally
> cancerous.

It is amazing to me that urologists can still be missing PCa.  I guess it's
not as exacting as it seems.

It sounds like you have done a considerable bit of research which, I don't
have to tell you, is your best defense to this disease.

Welcome to the NG.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

Clive R - 03 Feb 2004 10:16 GMT
BAD NEWS ...well we've seen the radiation oncologist and gotten onto a
program of lupron followed by the external beam therapy in six weeks
or so. happy about that.

the big worry is that the radiation specialist told us to get another
PSA test so that we could use that as a new baseline immediately
before starting the lupron.

well we've just heard its up to 53, and we are devastated by the rapid
ascent. anyone have any comment. Is this as grave as it sounds?

> > I am 43 years old and was diagnosed with prostate cancer in mid
> > November 2003.  My PSA was only 5.4 & the urologists were treating me
[quoted text clipped - 13 lines]
>
> Welcome to the NG.
c palmer - 03 Feb 2004 10:50 GMT
hi - the psa numbers are as grave as they sound.  i wish i could sugar
coat it, but this situation is such as to not afford that luxury.

a 53 is a 53.  the only thing you can do is hope that the test was done
wrong.  if it comes back higher, then you also know that the diagnosis
of a gleason of 10 was correct and to act accordingly.  

talking in the positive, the good news is that it is still caught
somewhat early.  by catching it like this has added years to his life.
and these years, i might add are quality years.  he's in good health and
will still enjoy the good health.

the lupron along with the radiation should drop his psa is <.1 in short
order and that's also a good sign.  i'm not a doctor, but that is the
way it normally goes, so you will know what to look for.  

also, it should be brought out that a gleason of 10 is total cell
breakdown and the amount of psa being produced is not as much as a
prostate cell with cancer, because the cell structure is so damaged, it
can't produce the psa in that amount.  so if the number is up as fast as
has been indicated, then there are a lot more prostate cancer cells and
they have amass in number to give the rise.   i hope this makes sense so
far.

the lupron will starve them and put them to sleep which is why he was
have a good quality of life.  there are two type of prostate cancers
cell.  those that are affected by the lupron and those that aren't the
ones that are not, usually are slow growing, which also is a good sign.

look for and see if you can get him into a clinical trial.

all the best,

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
Clive R - 03 Feb 2004 19:34 GMT
Curtis

thanks for the response.
i'm not sure i followed your flow in terms of the production of the psa.

> hi - the psa numbers are as grave as they sound.  i wish i could sugar
> coat it, but this situation is such as to not afford that luxury.
[quoted text clipped - 32 lines]
>
> knowledge is power - growing old is mandatory - growing wise is optional
c palmer - 03 Feb 2004 23:08 GMT
hi clive - this is going to be a simplified response on the explanation
of this.

cancer cells did not die off as regular cells, that is the problem with
cancer.

now, since they reproduce because they are hormone driven, then that
presents a problem.  the more psa available, the faster they reproduce.

the psa test measures the amount of psa in the blood.  since there are
more of them, a higher level of psa than normal.  

but as the prostate cell structure is damaged, then it can not produce
the same amount of psa - per cell - as it has done in the past.  the
more damage is done to the cell structure, the less psa is being
produced.
when you get to the extreme cell structure damage almost no psa is being
produced per cell that is cancerous.

now, using a psa test as a guideline, one may be able to see why they
say the prostate cancer was upgraded on the path report as compared to
before the surgery.  
if i person has a gleason of 5, then chances are a better representation
of cancer growth, but as that number rises, then, it turns into more and
more a crystal ball effect.

since we are talking about a gleason of 10 - the maximum.  my question
back to you would be, "how predictable would the level of psa be, if
very little psa per cancer cell is being made?  also, look at how much
damage could be done to the human body without tripping any alarms
because of excessive psa level until it is too late. and also how great
is the prostate cancer inside the body?"

as anyone in the newsgroup can tell you, the higher the number, the more
surprises can happen.  it would be nice if one doesn't have these
surprises, but it happens.

to prove my point, and maybe someone else can chime in on this.  take
two cases - both of them are a gleason of 7.  one is a gleason of 3 + 4,
and the other is 4 + 3.  the psa level is the same for both them.  are
the cancer equally as aggressive?

i hope that explained what i was trying to say.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
Danny McCarty - 04 Feb 2004 22:15 GMT
>Subject: Re: Father in law; gleason 5+5 PSA 18
>From: PALMER_ENT@webtv.net  (c palmer)
[quoted text clipped - 46 lines]
>
>~ curtis

Just a clarification- psa does NOT produce or feed PCa, that is done by
testosterone.  We almost never see Gleason 10 that is not associated with large
PSA scores, but you are right that the actual number of PCa cells may be much
higher than suggested by the PSA number if the Gleason score is 10.  The
relationship is not as linear as when the Gleason is only 5 or so.  Of course,
the Gleason score is old history after RRP, since the prostate ain't there
anymore. Biopsy on mets is rarely done.
Steve Kramer - 03 Feb 2004 11:52 GMT
Clive,

It's way too early to get terribly excited about this.  After a month or two
of Lupron, the PSA will likely be undetectable.  None of what you've told us
is a good sign, but Lupron will take care of all that for awhile.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

> BAD NEWS ...well we've seen the radiation oncologist and gotten onto a
> program of lupron followed by the external beam therapy in six weeks
[quoted text clipped - 24 lines]
> >
> > Welcome to the NG.
Clive R - 03 Feb 2004 10:16 GMT
BAD NEWS ...well we've seen the radiation oncologist and gotten onto a
program of lupron followed by the external beam therapy in six weeks
or so. happy about that.

the big worry is that the radiation specialist told us to get another
PSA test so that we could use that as a new baseline immediately
before starting the lupron.

well we've just heard its up to 53, and we are devastated by the rapid
ascent. anyone have any comment. Is this as grave as it sounds?

> > I am 43 years old and was diagnosed with prostate cancer in mid
> > November 2003.  My PSA was only 5.4 & the urologists were treating me
[quoted text clipped - 13 lines]
>
> Welcome to the NG.
Danny McCarty - 03 Feb 2004 20:14 GMT
>Subject: Re: Father in law; gleason 5+5 PSA 18
>From: croberts2@mac.com  (Clive R)
[quoted text clipped - 11 lines]
>well we've just heard its up to 53, and we are devastated by the rapid
>ascent. anyone have any comment. Is this as grave as it sounds?

Lupron causes a testosterone surge and consequent increase in PSA if something
like Casodex is not used for a while to block PCa absorbtion and use of that
extra testosterone.  I don't know how long the surge lasts.  But still, a PSA
of 53 seems a bit high even for that.
Clive R - 04 Feb 2004 09:18 GMT
danny

he had the blood test, then the lupron injection and then got the
blood test result....so the lupron wouldn'tt have had any impact on
htis

> >Subject: Re: Father in law; gleason 5+5 PSA 18
> >From: croberts2@mac.com  (Clive R)
[quoted text clipped - 16 lines]
> extra testosterone.  I don't know how long the surge lasts.  But still, a PSA
> of 53 seems a bit high even for that.
 
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