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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2007

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Newly Diagnosed

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Hugh Kearnley - 12 Jan 2007 15:00 GMT
Well  - a few days ago that is.
I posted in another group - didnt see this one at first.
I have I'm told, an advanced Prostate Cancer that has gone to the Bones.
Had a bone scan, a PSA test of 140 - no Gleason score as yet.
Currently taking Cyproterone, but had an injection of - Decapertyl? and will
stop using the Cyproterone in two weeks time.
That will be just in time to see an Oncologist for the first time.
I'm 55, Diabetic T2 and also have CHD. I live in Glasgow, UK.
I had been having a lot of lower back pain for several months - wrongly
diagnosed several times as Urinary tract infections and given ever stronger
Antibios and Painkillers until I lost my balance one afternoon at the GP and
fell on my backside.
I know very little about PC except what little I was told by a Urologist and
my own GP
I have to wait almost another two weeks to be seen by an Oncologist, so I'll
learn a lot more then.
I'll freely admit it - I am more than a little bit scared now the initial
shock has worn off.
However, I just hope THIS group is as friendly and advice-helpful as the
diabetic ones.
I'll post again AFTER I see the Oncologist.
Thanks for listening.
JerryW - 12 Jan 2007 15:43 GMT
> Well  - a few days ago that is.
> I posted in another group - didnt see this one at first.
[quoted text clipped - 18 lines]
> I'll post again AFTER I see the Oncologist.
> Thanks for listening.

Hugh,

I am extremely sorry to hear of your diagnosis, but am pleased to welcome
you to our "not-so-little" club...the club nobody wants to join.

There are many folks on this fine newsgroup who are battling advanced stages
of this disease and who will be joining in to offer both advice and support.
The rest of us, all PCa (prostate cancer) survivors or caregivers of
survivors, will be here with what support and help we can offer. We do have
several of your countrymen (-women) here as well. I don't pretend to be all
that knowledgeable in the various treatments of advanced PCa, but plenty of
others here are.

We understand and can relate to your feelings of apprehension and fear at
this terrible news. Please be assured that there are treatments available to
combat even the most advanced stages of PCa.

Good luck and good health.
Signature

JerryW

Please respond to group; email address is not valid

2/11/04 PSA 2.6, Suspicious DRE (age 62)
2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe
5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes
Fully continent by 9/04
PSA <0.1 since

kh - 12 Jan 2007 15:56 GMT
> Well  - a few days ago that is.
> I posted in another group - didnt see this one at first.
[quoted text clipped - 4 lines]
> That will be just in time to see an Oncologist for the first time.
> I'm 55, Diabetic T2 and also have CHD.

too young.  Way too young.

Sorry to hear about the mets.

They'll probably put you on a Testosterone blocker.   Good chance
that'll slow the disease to a crawl.   The treatment will erase your
libido, so you should factor that into your lifestyle.

Lupron ran my blood sugar to 300 and I'm not diabetic, so watch your
fasting blood sugar if they give you Lupron.

-kh
Jean - 12 Jan 2007 16:12 GMT
Welcome to the group Hugh, and we're so sorry to hear of your diagnosis but
please know that there are a lot of folks here who care.

I'm sure someone with more knowledge than we have will be along soon to
answer your questions.

Jean & Larry
Paul & Lisa - 12 Jan 2007 16:34 GMT
Hi Hugh,

Welcome.  I am sorry about your news. This is a very supportive group
and I hope you find comfort here.  

Lisa & Paul
Ed Friedman - 12 Jan 2007 18:56 GMT
> Well  - a few days ago that is.
> I posted in another group - didnt see this one at first.
[quoted text clipped - 18 lines]
> I'll post again AFTER I see the Oncologist.
> Thanks for listening.

Hugh,

Sorry to hear about your diagnosis. Your oncologist will almost
certainly recommend continous androgen deprivation therapy.  However,
you should educate yourself as much as possible - read books, read past
postings in this newsgroup, and check out prostate cancer web sites.  In
your case, you might want to also read the abstract at:

http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?
vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view&confI
D=34&index=y&abstractID=34127


(If you can't read the above link because of the length of the
characters, here it is again broken into smaller lines, but you should
put it all together in your browser).

http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a0
1d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view
&confID=34&index=y&abstractID=34127

Good luck,

Ed Friedman
Steve Jordan - 13 Jan 2007 00:41 GMT
On January 12, Ed replied to Hugh:

> Sorry to hear about your diagnosis. Your oncologist will almost
> certainly recommend continous androgen deprivation therapy.  However,
[quoted text clipped - 13 lines]
>
> &confID=34&index=y&abstractID=34127

Or better yet, the 189 characters in Ed's link are reduced by
tinyurl.com to the following 25:

http://tinyurl.com/yk9vsr

Very significantly, Hugh wrote:

> I know very little about PC except what little I was told by a Urologist and
> my own GP

Neither of whom might be up to date.

I recommend the following study references:

1. The authoritative website of the Prostate Cancer Research Institute
(PCRI) at:

http://prostate-cancer.org/index.html

...and go first to the section "Newly Diagnosed."

2. The excellent text _A Primer on Prostate Cancer_ 2nd ed., subtitled
"The Empowered Patient's Guide" by medical oncologist and PCa (prostate
cancer) specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano.
It is available via the PCRI website and from any bookseller.

There are also several chapters of UsToo! International in the UK. See
their website at

http://www.ustoo.com/

....and look up a nearby chapter. Members will likely have very good
information with a local viewpoint.

I believe that UK medics (and their government bosses) consider the Yank
treatment (tx) of PCa to be too aggressive. There is a great deal of
controversy on that point. But controversy is common in all aspects of
medicine. Each patient must decide for himself what is best.

What is important and IMO too often neglected in these controversies is
the welfare of the patients who suffer while medics argue.

Here is information on a med onc in London who is strongly recommended
by Dr. Strum, whom I trust absolutely:

Professor R T D Oliver
Consultant Medical Oncologist
Holly House Hospital
High Road
Buckhurst Hill, Essex
IG9 5HX
T: 0845 257 8522
F: 020 8554 4895
E: u.d.somasundram@qmul.ac.uk

The London Clinic
20 Devonshire Place
London
W1G 6BW

Hugh has been drafted into a war that is not of his choosing. His
survival might very well depend upon his education about the merciless
enemy that has attacked him (the same can be said of us all). As in any
war, knowledge of the enemy is absolutely essential. Life has changed;
probably permanently.

Study, Learn, Take Charge!

Regards,

Steve J

"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences  and
contingencies involved in one's own decisions. This focus provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled
"The Empowered Patient's Guide."
RR - 13 Jan 2007 08:15 GMT
Indeed this group is most friendly and helpful.
You will find that you are not the only one in the world
facing a serious problem and members will share with you
similar experiences.

>Well  - a few days ago that is.
>I posted in another group - didnt see this one at first.
[quoted text clipped - 18 lines]
>I'll post again AFTER I see the Oncologist.
>Thanks for listening.
J - 13 Jan 2007 10:13 GMT
> Well  - a few days ago that is.
> I posted in another group - didnt see this one at first.
[quoted text clipped - 18 lines]
> I'll post again AFTER I see the Oncologist.
> Thanks for listening.

Find Your Nearest Support Group in Scotland
http://www.prostatescot.co.uk/HTML_Pages/Groups.html
Ask them if they have information about prostate cancer spread to the bones.
If they don't call the office of the oncologist you're scheduled to see and ask
if they have brochures that you can pick up or have mailed to you about
treatment options and questions to ask, before arriving at the oncologist's.
Some find there's not enough time or they only remember questions after leaving
or don't remember what was said or didn't have time to write things down. If
someone can go with you....or tape record the meeting, so yuo can ask questions
and not have to remember or write the questions down.

http://www.cancerbackup.org.uk/Resourcessupport/Organisations/Searchall/237
Macmillan Cancer Support: Scotland
Scottish office of Macmillan Cancer Support which supports and develops services
to provide specialist care for people with cancer at every stage of their
illness. Services include Macmillan doctors, nurses, and other health
professionals. Also funds buildings for cancer care and information, and offers
patient grants to people with financial difficulty because of their illness.
Services are free, referrals via GP, hospital doctor or nurse, or district
nurse.

These are the two medications given to you by the urologist
<http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonalth
erapies/Triptorelin
>

<http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonalth
erapies/Cyproterone
>

i hope this helps for now.
J
Steve Kramer - 13 Jan 2007 12:48 GMT
> Well  - a few days ago that is.
> I posted in another group - didnt see this one at first.

First, Hugh, welcome to our little newsgroup.  You have done well in finding
us.  You will get well-informed opinions here and very little soft soap.

> I have I'm told, an advanced Prostate Cancer that has gone to the Bones.
> Had a bone scan, a PSA test of 140 - no Gleason score as yet.

Your Gleason, while interesting, is probably of less relavance at your
stage.  Your stage (T4N?M1?) means that your cancer is incurable with
current treatments.  The Gleason may give you some hint of how fast the
cancer would progress, all other things being equal.  However, nothing is
equal in this game.

> Currently taking Cyproterone, but had an injection of - Decapertyl? and
> will stop using the Cyproterone in two weeks time.

It sounds like what we call Casodex and Lupron.  I am on both.  The side
effects can range from almost none to severe.  Mine are less than most and I
attribute that to my age (52) and the fact that I walk 3-5 miles a day, 3-5
times a week (less in Winter).

The farther this treatment takes your PSA down, the longer you will likely
live.  That's pretty much the long and short of it.

Furthermore, if you can live another 8 years, you may see a cure.

> I had been having a lot of lower back pain for several months - wrongly
> diagnosed several times as Urinary tract infections

You may be happy to know that the wrong diagnosis probably had very little
to do with your long-range prognosis.  Ordinarily, PCa is a very slow
growing disease and if you had pain from mets, it was already too late.

Finally, the GOOD news.  There are very good medications for advanced
prostate cancer today that were not available even 10 years ago.  Doctors
can give us a fairly decent life.

Philosophically speaking, God has given you and me a knowledge as to how we
are going to die and plenty of time to prepare.  To some degree, even when.
How many people can say that?

Signature

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
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA  .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum

kh - 13 Jan 2007 13:39 GMT
> Your Gleason, while interesting, is probably of less relavance at your
> stage.  Your stage (T4N?M1?) means that your cancer is incurable with
> current treatments.

T4, yeah, I don't know where the T2 came from.
...
> The farther this treatment takes your PSA down, the longer you will likely
> live.  That's pretty much the long and short of it.
>
> Furthermore, if you can live another 8 years, you may see a cure.

I'm guessing that it'll be sooner than that.  Science, especially
genetic engineering, is moving really fast. Something like the way
Prostascint binds a radioactive tracer to the prostate proteins,
deliver a package of markers, the T-cells attack, bang, you're cured.

Easy to write science-fiction, harder to actually do it.  Lots of smart
people out there working on the problem from different angles.

When I was diagnosed in 2004, the I read books written in 2002 that
talked about 3DCRT as the standard external beam radiation therapy and
something called IMRT was the future.

When they put me on the table, it was an IMRT that treated me.

In December of 2006, INOVA put up banners up for their Trilogy
radiation machine.  Dynamic beam adjustment under computer control, the
three gold targets.  Much more precise, a lot more software in it than
an IMRT.

Three different models of radiation machines in about 5 years.   Each a
big improvement of the previous.  I'm hoping for a medical breakthrough
in about that timeframe.

No way to know, of course.

The trick is to go with what works now.   For mets, it's ADT and doing
everything to mitigate the side effects.  Hang on for the ride.  

-kh
Hugh Kearnley - 14 Jan 2007 07:05 GMT
Thankyou all very much for the swift responses, kind advice and
recommendations.
I'm sorry if my figure "T2" wasn't properly understood - MY fault entirely -
it relates to my Diabetes - I'm "TYPE 2"
and to avoid any possible misunderstandings - I should have not have
shortened it - again MY fault - I was just making assumptions - CHD is
Coronary Heart Disease.
Again though - thanks so much for all the positive information.
There is apparently a support group here is Glasgow and I will be getting in
touch with them too.
Thankyou!

> T4, yeah, I don't know where the T2 came from.
Steve Kramer - 14 Jan 2007 12:08 GMT
> I'm sorry if my figure "T2" wasn't properly understood - MY fault
> entirely - it relates to my Diabetes - I'm "TYPE 2"
> and to avoid any possible misunderstandings - I should have not have
> shortened it - again MY fault -

Nonsense, Hugh.  At the worst, this is a no-fault medium.  We have so many
people, from so many cultures and countries, there are bound to be
misunderstandings of abbreviations and phrases seemingly common to all.

However, in this case, I knew exactly what you meant.  But again, we have so
many messages, none of us have the time to critically review all of them.
So, when an abbreviation very common to prostate cancer comes up (e,g., T1,
T2, ...) we are quick to jump on that which we think is familiar.

It gets straightened out very quickly, as you saw.
kh - 14 Jan 2007 15:38 GMT
> Thankyou all very much for the swift responses, kind advice and
> recommendations.
> I'm sorry if my figure "T2" wasn't properly understood - MY fault entirely -
> it relates to my Diabetes - I'm "TYPE 2"

I read it as T2, Diabetic.  I'm using a 12 inch screen at 1024x768.  I
can barely see comma's and periods.

Anyway, I hope you have the bad news, good news in perspective.

The bad news is that at this time, advanced prostate cancer is
incurable.  Given enough time, it will kill you.  The treatments have
unpleasant side effects. Some of the treatment's unpleasant side
effects are indistinguishable from aging.  Advanced prostate cancer
itself is a bad way to go.

The good news is that it's prostate cancer.  It's usually slow growing.
There are treatments that will slow it even more.  There are many
coping strategies.

The more optimistic are anticipating a "magic" cure.

Even the less optimistic come to terms with it.  Most of us are over
50, some are over 60, 70, 80, and have to deal with aging issues
anyway.  This doesn't make it easier but the strategies are the same:

Find the best docs you can.

Do your own research.

Get aggressive on your health, diet, exercise; keep to your medical
schedule.

Live life to its fullest; make every minute count double.

For example, you ever have a $50 bottle of wine?   How about building a
home theater in the basement?  You don't need top end, DLP, $200
speakers, good chairs, and coat of paint go a long way.  Some folks
like sports, others might always wanted to get their lady something
from Neiman Marcus, "... because you're special to me."

If you have an older car, a wash and wax, clean windshields, toss out
the McDonalds' wrappers and cups, and properly inflated tires will
improve that experience.

-kh going to clean my windshield now.
I.P. Freely - 15 Jan 2007 01:01 GMT
> Some of the treatment's unpleasant side
> effects are indistinguishable from aging.

So say lazy or ignorant physicians! You wisely and accurately covered
yer butt by invoking the "some" word, but *many* of the problems they
blame on age are in fact preventable and/or correctable because age has
little to do with them or is an indirect contributor. Most of ADT's SEs
are prime examples of problems physicians incorrectly dismiss as
age-related and thus untreatable.

I.P.
 
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