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

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Decision Time.

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Keith - 30 Jan 2004 20:46 GMT
Hello Everyone,
I'm new to this site and also new to the realization that I have early stage
PC.
I have been given four alternatives for treatment, Surgery,Beam Radiation,
Seed Implants or Watchfull Waiting. I feel that I am disposed toward the
Seeds, but are there members of the group who have seriously considered
waiting? My doctor believes that 80% of treatment is carried out
uneccessarily, because of the uncertainty of the progression of the tumour.
Can a change of diet and lifestyle possibly change the situation? Or is this
just wishfull thinking?
Thank you in advance, for any advice that you might have.
Keith, aged61, U.K.
Bob Oaks - 30 Jan 2004 21:27 GMT
> Hello Everyone,
> I'm new to this site and also new to the realization that I have early stage
[quoted text clipped - 8 lines]
> Thank you in advance, for any advice that you might have.
> Keith, aged61, U.K.

You didn't say what your PSA and Gleason score are.  My PSA went from about
2.5 to 4.0 in two years, and my urologist said that in effect we had already
done watchful waiting--and watched the PSA go up!  I am also your age.  If
you were 81 or maybe even 71, watchful waiting might be OK in my opinion.
It also depends on how long men in your family generally live, but if you
expect to live for another 15, 20 or more years, I would think some kind of
treatment is called for.  I fortunately discovered my PCa early and decided
on seeds, which was performed 3 wewks ago.  It was really very easy (I slept
through the exciting part) and I had no pain or discomfort at all except for
some bleeding for 48 hours afterwards.  Compared to some of the other
experiences on this board, I feel very fortunate.
Steve Kramer - 30 Jan 2004 22:12 GMT
> I'm new to this site and also new to the realization that I have early stage
> PC.

Welcome to the club you did not wish to join.  And welcome to the newsgroup.
You've come to the right place.

> I have been given four alternatives for treatment, Surgery,Beam Radiation,
> Seed Implants or Watchfull Waiting.

For a 61 year old, watchful waiting (WW) is not an option.  Whoever told you
it is should not be listened to.

> I feel that I am disposed toward the
> Seeds, but are there members of the group who have seriously considered
> waiting? My doctor believes that 80% of treatment is carried out
> uneccessarily, because of the uncertainty of the progression of the tumour.

If you have prostate cancer and you do nothing, it will kill you.  Of course
you do not give your PSA, Gleason, or Stage, but I'm assuming, judging from
your doc's statements, your PSA is over 4.0 (probably because he failed to
find it earlier), your Gleason is 3+3 or 3+4, and your Stage is .... well, I
haven't a clue.  If that is the case, I cannot imagine under any
circumstances why a 61-year-old man would choose WW unless he is riddled
with diabetis, heart disease, and a quadraplegic with the life expectancy of
a tse-tse fly.

> Can a change of diet and lifestyle possibly change the situation? Or is this
> just wishfull thinking?

It might have staved it off, but if you got it, you got it.  In the future,
diet and exercise can stave off recurrence and if it is terminal, stave off
death.  But, you cannot wish it away.

Run, don't walk, to the nearest bookstore and pick up a copy of Dr. Patrick
Walsh's Guide to Surviving Prostate Cancer, the leading book on prostate
cancer.  You need to find out all you can about the disease before making
your decision -- and it is YOUR decision.  Also, check out www.phoenix5.org,
the leading website on prostate cancer -- built by a prostate cancer victim.

We stand by, ready, willing and able to help.  We are not doctors, but the
cumulative knowledge of prostate cancer here is proably more than 99% of the
doctors in the world.

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

MH - 30 Jan 2004 22:30 GMT
Hi, Keith...
Sorry to welcome you to the club, but this is a great group of people.
You'll find lots of support here

At your age, I would never consider waiting.  Most will agree that the end
results with seeds, external radiation, and RP are pretty close to the same.
You need to read as much as you can, weigh all your options, and make the
decision that you feel is right for *you*.... then don't look back!

Good luck!  And feel free to ask questions!

MikeH
Age 52
LRP 11/21/02
PSAs undetectable ever since!
> Hello Everyone,
> I'm new to this site and also new to the realization that I have early stage
[quoted text clipped - 8 lines]
> Thank you in advance, for any advice that you might have.
> Keith, aged61, U.K.
Leonard Evens - 30 Jan 2004 22:38 GMT
> Hello Everyone,
> I'm new to this site and also new to the realization that I have early stage
[quoted text clipped - 8 lines]
> Thank you in advance, for any advice that you might have.
> Keith, aged61, U.K.

Keep in mind that neither I nor the other responders are physicians, so
what we say is just based on our personal experience and what we have
read.  If you doubt your doctor's suggestions, seek a second or even
third opinion.

A lot depends on the specific diagnosis.   If the cancer is very small,
and the PSA and Gleason numbers are also low, then watchful waiting may
in some cases be indicated.  But it seems to me that 61 is a bit young
to choose watchful waiting unless the Gleason score is less than 5.

Also, doctors in England are often more willing to wait than those in
the US.  Only time will tell which approach is better.

There isn't too much in terms of life style that will make a big
difference, but there are some things which might help and can't hurt.
A low fat diet might do some good.   There is now in the US a clinical
trial in progress which is trying to determine if 200 micrograms of
Selenium and 400 units of Vitamin E will help prevent prostate cancer.
Even if the results turn out to be positive, it won't necessarily mean
that it will slow down a cancer already diagnosed.  But it probably
can't hurt to take Vitamin E and Selenium as long as you are careful not
to go above the prescribed dose, particularly for Selenium.   There is
some evidence that a diet high in Calcium, such as the equivalent of
four glasses of milk a day, may encourage the growth of prostate cancer.
 On the other hand, you don't want to cut out calcium from your diet
altogether.   There has been some recent evidence that being
significantly overweight can encourage the growth of prostate cancer, so
if that applies to you, losing some weight may help.   It will certainly
help your overall health in any case.   There is some evidence that
cooked tomato products or other foods containing lycopenes may slow down
cancers.
jimhoney - 30 Jan 2004 23:09 GMT
> Hello Everyone,
> I'm new to this site and also new to the realization that I have early stage
[quoted text clipped - 4 lines]
> waiting? My doctor believes that 80% of treatment is carried out
> uneccessarily, because of the uncertainty of the progression of the tumour.

Yes, I certainly thought about that when I was diagnosed with PCa (age 52,
Gleason 6, PSA 5.7).  I can't remember exactly how I came up with the
figure, but I think the chances that I could have gotten away with doing
nothing were about 15%.  I didn't like those odds.  (I don't waste my money
on the Lottery either.)

I'm not a doctor, so I can't argue with yours.  But what springs to mind in
response to his/her comment that 80% of treatment is carried out
unnecessarily is:  if so, then so what?  We're not talking about a public
health study or the NHS budget here, this is your future.  What exactly are
your own chances of getting away with doing nothing?  (The answer is
contained in the Partin Tables, http://urology.jhu.edu/Partin_tables/)

> Can a change of diet and lifestyle possibly change the situation? Or is this
> just wishfull thinking?

So far as I know, there is no scientific evidence that diet and lifestyle
has any effect on prostate cancer after it is present.  As for
non-scientific evidence, you will want to see the postings pertaining to
Martin Howard in the archives of this newsgroup.

> Thank you in advance, for any advice that you might have.
> Keith, aged61, U.K.

Make an informed decision, and then don't look back.

jimhoney
standard RRP, cured, no significant aftereffects
c palmer - 30 Jan 2004 23:42 GMT
hi keith - you've gotten good advice here, but in answer to your
question about change in diet or lifestyle, we just lost martin howard
in your neck of the neighborhood.  

he tried that different route and in november was his last post and he
felt that he was doing the right thing with his type of treatments and
what he was taking.  

he said that he wasn't in any pain as compared to what it was in the
past, but he passed away in december.

his psa was in the 300's at the time.

bottom line - the lower the number, the more options you have.  right
now, you have a lot of options on the table and you need to research as
to which one is the best for you and what you most comfortable with.  

the prostate cancer is not going to go away and you are right, that
would be wishing thinking.

hope this helps.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
Wakeley Purple - 31 Jan 2004 03:30 GMT
> Hello Everyone,
> I'm new to this site and also new to the realization that I have early
[quoted text clipped - 8 lines]
> Thank you in advance, for any advice that you might have.
> Keith, aged61, U.K.

I'm not too much younger than you, and I recently chose Radical P-ectomy. I
am very pleased with the results 2.5 weeks post-op. One of the reasons I
decided to act was that I knew I was in good condition health-wise and
physically and would probably recover well from the surgery. I plan on
living many more years. I had no way to tell what kind of condition I might
have been in the future if the PCa had become a bigger problem. Now I have
a >80% chance of long-term success (read "cure").

It's a tough decision. You'll get conflicting information from well-meaning
people and knowledgeable doctors. In the end you have to make the decision
that makes the most sense to you. That can range from my 74-yr old friend's
RRP decision last year to Martin Howard's decision to fight it his own way
to the end. Nobody can say either was "right", they just chose different
paths. None of us are here forever.

Welcome to the club that nobody wants to join.

Signature

Wake

Age 58
PSA 3.8
Biopsy positive 5% in 1 of 10 cores
Gleason 3+3
T1c
RRP 1/12/04
Pathology agrees with biopsy
Negative margins

Alan Meyer - 31 Jan 2004 05:55 GMT
...
> My doctor believes that 80% of treatment is carried out
> uneccessarily, because of the uncertainty of the progression of the tumour.
...

Keith,

I've seen these kinds of statements before, but I have trouble believing
that they're useful for a 61 year old man.

It has been observed that many older men with prostate cancer die of
other causes.  If such men never developed serious symptoms,
treating them for PCa would have put them through unnecessary
trouble.

But these observations can be very misleading.  The great majority of
men who develop PCa are in their 70's or 80's.  Perhaps 80 or 90% of
them will die of other causes.  They die of other causes because, first,
they are already near the end of their natural lifespan and, second, the
cancers they have are slow growing, which is why they didn't show up
until the men were in their 70's or 80's.

Ask your doctor if 80% of men diagnosed at age 61 will die of other
causes if they get no treatment.  At age 61, you have a longer time left,
and probably a faster growing cancer, than men diagnosed at age 71
or 81.

I would seek treatment if I were you (in fact, I am like you and have
sought treatment.)

> Can a change of diet and lifestyle possibly change the situation? Or is this
> just wishfull thinking?

There is speculation about this but I am not aware of hard data that
proves that a man can fight cancer with diet and lifestyle change.

I have always eaten a fairly well balanced diet and gotten lots of
exercise, but I was diagnosed with cancer at age 57.  Another poster
on this newsgroup was running 10 mile races at age 58 when he got
diagnosed with cancer.  Another poster was an avid bicyclist.

For that matter, who could possibly be in better physical shape than
Lance Armstrong - who almost died of testicular cancer?

So I wouldn't put too much faith in diet and lifestyle as a way to
stop cancer.  It may improve your odds.  It may help you deal
with treatment and recovery.  It may even prolong your life without
treatment.  But I can't see it as a substitute for treatment.

   Alan
PAUL KRAUSE - 31 Jan 2004 13:20 GMT
in my case, i had my prostate removed. the cancer was 20% tumor on the
left side. the reason i made the decision, i didn't want to wonder every
minute "is the cancer still there, after the other procedures offered.
its a hard decision and i wish you good luck.
Tom Cular - 31 Jan 2004 15:31 GMT
Keith,

I'll add my opinion to those that you've already read. A vast amount of
information is available to help you make an informed decision, sometimes so
much information that it's confusing, however,at 61 watchful waiting should
not even be mentioned unless you have other potentially life threatening
illnesses.
I'm 62, very active and otherwise in good health, I was dx'd in Nov.03 with
T2C, Gleason 6 (3+3) with PSA 5.6 .
Started monthly Lupron in Dec. with permanent seeds planned for March 04. My
decision for treatment was based upon published information, personal
conversations with others who also have pca, lifestyle choices and
professional opinions of my urologist ( a surgeon who felt I was a good
candidate for seeds) and that of a radiology oncologist.
You have a tough decision to make, fortunately pca is normally slow as
cancers go and you need not make that decision overnight, but make an
informed decision soon.

Tom
> in my case, i had my prostate removed. the cancer was 20% tumor on the
> left side. the reason i made the decision, i didn't want to wonder every
> minute "is the cancer still there, after the other procedures offered.
> its a hard decision and i wish you good luck.
Alan Meyer - 31 Jan 2004 17:03 GMT
> Keith,
>
[quoted text clipped - 19 lines]
> > minute "is the cancer still there, after the other procedures offered.
> > its a hard decision and i wish you good luck.

Keith and Tom,

If you decide on getting implanted seeds without supplemental
external beam radiation, you might want to get a second opinion on
your Gleason score.  The reason is, the higher the Gleason score,
I believe, the greater chance there is for tumor penetration of the
prostate capsule.  I can't remember exactly where I've seen this, but
if I remember correctly, I have read reports on PubMed that say that
people at "intermediate risk" (i.e., Gleason = 7 or 10 < PSA < 20) have
a lower rate of cure with pure seeds (no external beam) than people
who get both.  The reason is that the external beam, given in lower
doses than it would be given if used as a monotherapy, is aimed at
the area immediately around the prostate and zaps any extensions
of the cancer into the surrounding tissue.

I had Gleason 4+3 and a PSA of 8.7 and my doctor prescribed
43 Grays of external beam treatment of the area one centimeter
around the prostate, in addition to brachytherapy in the prostate
itself.

Gleason scores are _often_ underevaluated.  My evaluation was
3+3.  But the second opinions from increasingly expert pathologists
were 3+4 and 4+3.

The external beam therapy is easy to take - but does take a long
time.  Mine was 23 treatments, one treatment of 200 centigrays
per day, 5 days a week.  Every morning I had to show up at the
hospital and wait my turn in the waiting room.  The treatment itself
was just a few minutes - pull down your pants, lie on the table, get
lined up, zap four times, pull up your pants, and on your way.

  Alan
olfart - 31 Jan 2004 17:30 GMT
> > Keith,
> >
[quoted text clipped - 56 lines]
>
>    Alan

I'm scheduled for the external beam IMRT  in march for the same reasons you
mentioned - makes sense to me to try to "clean up" the area around the
prostate before doing the seed implant.
As an aside, I'm pretty satisfied with mt Rad Onc who will actually do the
radiation and the seed implant. He was originally an Orthopedic surgeon. He
developed Lymphoma and evidently beat it. He went back to school and added
Oncology and radiology to his skills as a surgeon and has quite a few years
in the Oncology practice. I like the fact that he has "been there" so to
speak.
olfart - 31 Jan 2004 17:33 GMT
forgot my history-

Age - 67
8/12/02 - PSA 3.7
10/13/03 - PSA 4.69
11/11/03 - PSA 4.8
11/18/03 - Biopsy - 10 cores
one core-25% of core-Gleason 4+4=8
all other cores benign tissue
12/10/03 - Consult - Oncologist
12/16/03 - Consult - Radiation Oncologist
Treatment Plan -
HT - started 12/17/03 - Eulixen & Lupron
Radiation - IMRT to begin 3/14/04 - for 5 weeks
Theraseed implant after Radiation completed
Alan Meyer - 31 Jan 2004 17:49 GMT
> forgot my history-
>
[quoted text clipped - 11 lines]
> Radiation - IMRT to begin 3/14/04 - for 5 weeks
> Theraseed implant after Radiation completed

I see that although your PSA was low and you only showed cancer
in one core, but the Gleason was high and your doctor decided to be
conservative.

That makes sense to me.  IMRT just isn't that bad.  The only
effects I can attribute to external beam therapy were
some sunburn like effects around the anus, some exacerbation of
an existing hemorrhoid and, maybe, blood in the semen.  I say
"maybe" because I had also had a brachytherapy before that
which could have been the cause.

Good luck with your treatment.  Both radiation and surgery do
some violence to the body, but my impression is that radiation
does a whole lot less.
olfart - 31 Jan 2004 18:29 GMT
> > forgot my history-
> >
[quoted text clipped - 26 lines]
> some violence to the body, but my impression is that radiation
> does a whole lot less.

Brachy and then Radiation-
That's where my Dr seems to disagree with what seems to be a common
practice. His feeling is that the Radiation should come first followed by
the seeds. He feels that after the seeds are inplace any external radiation
might be in fact too much at once and *could* cause damage to surrounding
organs(bladder, etc).
Glad yours went so well
Alan Meyer - 31 Jan 2004 20:09 GMT
> Brachy and then Radiation-
> That's where my Dr seems to disagree with what seems to be a common
[quoted text clipped - 3 lines]
> organs(bladder, etc).
> Glad yours went so well

There seem to be different opinions.

My brachytherapy was high dose rate (HDR).  With that version, they
implant highly radioactive seeds for a very short period of time - a total
of about 15 minutes - and then withdraw them.  After that, I got EBRT for
about 4 weeks.  Then I got another HDR, then the final 4 EBRTs.

All of this is a black art.  IIRC, Heather's Ron got an HDR, then another
a week later, then EBRT.  Some get 3 HDRs instead of two.

Your doctor's reasoning makes sense.  The total dose is the same.
The effect on the cancer is the same.  But the stress on the healthy
cells may be a bit less.

Then of course the opposite theory could also be argued - that
the stress on the cancer cells will be a bit more if you give the seeds
first and then the RT.

I'm still scratching my head about it all.

   Alan
dale.j. - 31 Jan 2004 22:04 GMT


> All of this is a black art.  
>
>     Alan

This is the best discription of radiation therapy that I've seen.
You get five stars Alan.

Dale J.

Signature

Email:  dalej2@mac..com

Tom Cular - 01 Feb 2004 00:03 GMT
Alan,

What you and others are saying in regard to EBRT in conjunction with seeds
seems to make sense to me.

My slides were dx'd by two additional pathologists at different facilities
following the original, my youngest daughter is a second year resident and
insisted upon plural opinions, it's like having a second mom scolding me,
but I realize she's only doing it because she cares as I know the folks on
this group do.

Tom

Tom

> > All of this is a black art.
> >
[quoted text clipped - 4 lines]
>
> Dale J.
Heather - 01 Feb 2004 06:51 GMT
> > Brachy and then Radiation-
> > That's where my Dr seems to disagree with what seems to be a common
[quoted text clipped - 14 lines]
> All of this is a black art.  IIRC, Heather's Ron got an HDR, then another
> a week later, then EBRT.  Some get 3 HDRs instead of two.

Hi Guys.......

Not quite sure what you mean by a 'black art', but we think the two HDR
treatments, followed by 25 EBRT, was an excellent treatment.  I also
asked the doctor to radiate the lower abdomen as a 'just in case'.  Ron
had very few side effects......some fatigue being the worst, I guess.
But it was only for a few weeks.

His PSA in Feb. of 03 was 11.47......it dropped in June to 10.08.
(Assuming that he had the Feb. one too soon after the DRE).

Gleason was 4 + 3, Pca in 80% of left lobe.  Bone & CT scans showed no
abnormalities.  His first PSA on Nov. 1 dropped to 3.5......4 weeks
after he finished the EBRT & 3 months after the 2nd HDR treatment.  Next
week he has his next one......but won't get the results for a few days.
Due to distance, we get the test done while he meets with the
'team'.......as he is part of a study, like Alan.   We refuse to worry
about it because that just plain won't change anything.  (G)

So we will let you know how he does, but we have the utmost confidence
in Sunnybrook's Cancer Centre.  And besides, we now have a trip to the
UK to think about.......not what happened in the past.  It seems like a
distant bad dream now.

For 71.5 years old, he is in excellent shape.......and feeling just
fine.  The only lasting effect that he has (and we were warned about) is
that his bladder is not as 'elastic' as it was.......so he doesn't try
to hold it for an hour.  But he rarely gets up at night to go.

Night......Heather (and Ron)
TampaSailor - 05 Feb 2004 18:18 GMT
Alan,  What have you lost from the treatment?
I will make a decision on what to do in the next 3 weeks.

rgds, ly

>> I'll add my opinion to those that you've already read. A vast amount of
>> information is available to help you make an informed decision, sometimes
[quoted text clipped - 54 lines]
>
>   Alan
Alan Meyer - 17 Feb 2004 03:10 GMT
ly,

Sorry I didn't respond to this.  I just now spotted this message.

My treatment ended January 22.  The treatment consisted of:

7.5 mg Lupron
22.5 mg Lupron one month later
HDR brachytherapy - 10.5 Grays about 3 weeks later
External Beam (3D conformal) radiation - 46 Grays
2nd HDR brachytherapy - 10.5 Grays

So far, the after effects are as follows:

Painfull hemorrhoid.  Lasted about a week after treatment.

Difficulty urinating - still present but not as bad.  I'm down to
one Flowmax every two days now.

Radiation burns around the anus - irritated when I sat down.
A doughnut cushion was of great help with that.  This is mostly
cleared up 3 weeks after the end.

Some loss of pubic hair (hadn't known that would happen).  It
may grow back, don't know yet.

Major loss of libido due to the Lupron.  I'm hoping that will
come back in another month or so.

Various sexual side effects - can still get an erection, but
not as easily - maybe that will come back after the Lupron
wears off.  No semen appears with orgasm.  Orgasm is
much less of a climax than before.  Also harder to achieve,
but I expect to need some more time on all that.  Some
blood appeared instead of ejaculate - but that should
wear off soon.

Effects I did NOT have:

Didn't miss any work except for actual periods of treatment.

Didn't have a catheter or Foley bag except during the
brachytherapy procedures themselves.

Very little pain.

No incontinence.

Hope this helps.

  Alan

> Alan,  What have you lost from the treatment?
> I will make a decision on what to do in the next 3 weeks.
[quoted text clipped - 59 lines]
> >
> >   Alan
 
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