There is something weird here.  2.5 years at 0.1 and then a "26"???  Is
that number right??  I would most definitely ask for another test when
you see the doctor......they could have mixed your husband's up with
someone else's.

Best.....Heather

On April 18, Debbie wrote:

I'll give my usual mantra: A urologist is a surgeon, and unless he is
appropriately educated, he is not a cancer specialist.

The surgeon's job was finished in 2004. I most earnestly recommend that
Allen see a medical oncologist, a real cancer specialist, preferably one
who is very familiar with PCa.

Listings of some but not all PCa specialists can be found on the
authoritative website of the Prostate Cancer Research Institute at:
http://prostate-cancer.org/index.html

Click on "Resources." The medics are under the second topic.

It might be time to move on to androgen deprivation therapy (ADT). Or
not; depends upon the entire clinical record.

Good luck.

Regards,

Steve J

"We must tailor the treatment to the nature of the disease. We must
listen to the biology."
-- Stephen B. Strum, MD

HI DEB, MY HUSBAND HAD A RP IN 97 HIS PSA HAS GONE UP AND DOWN BETWEEN
0.20 TO 0.30 FOR THE LAST  SEVERAL YEARS AND DROPPING DOWN AS LOW AS
0.12! SAME LAB EACH TIME.
I AGREE THE SURGEONS JOB WAS OVER AFTER SURGERY. THEY ONLY[URO] KNOW
HOW TO CUT.  WE HAVE SEEN A ONCOLOGIST AND A RADIATION ONCOLOGIST IN
THE LAST 2 MONTHS. EVERYONE SAYS EXT BEAM RAD. THEY ALL SAY "IT COULD
BE BENIGN TISSUE" AS IT HAS HAD A VERY LOW AND SLOW RISE OVER 10
YEARS. MIGHT I ADD THE ONCOLOGIST GAVE US 5 MINUTES AFTER WE FELL
ASLEEP IN THE EXAMINING AFTER WAITING 3 HOURS FOR HIM!
WE JUST MADE AN APPOINTMENT WITH DR. CHARLES MYERS IN VIRGINIA. HE IS
WELL KNOWN AND FREQ. TXS. HOLISTICALLY AND HAS HAD  ALOT OF SUCCESS
LOWERING PSA'S WITHOUT BEING INVASIVE.
GOOD LUCK
LIZ

Hello all - it has been a long time since I posted here, but once again
I need your advice. Allen, 53 years, who had a prostatectomy in August
of 2004 and has had undetectable PSA since then, just got a PSA reading
of .26. He had a test in December (as in 4 months ago) and it was .1.
His original stats were Gleason 7 (3+4), capsular penetration but clear
margins. When contacting the doctor's office, the nurse said our
urologist doesn't really worry about a rising PSA until it gets to 1.0.
We haven't accepted that and insisted on an appointment (next Thursday).
I'm feeling very anxious - wife of 27 years. I could use some advice
from those of you who have been here. Thanks so much. Debbie

====> hi debbie - as a general rule, pca recurrence happens around 18
months after surgery.  doing the math.  it was a little over 24 months
or so before the psa started to climb.

they will probably want to do SRT on him to radiate the field of the
prostate bed.  this should kill any remaining pca cells that they might
have missed.

there are different types of radiation treatments to do this.  3-D is
just one of them.   might want to look at proton beam too, because, in
my opinion, i think it might do a better job with less damage to
surrounding tissue.  only problem with this treatment is that these
units are not that common because of the size and cost of the unit.

hope this information helps,

~ 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

Hello, Debbie:

It's a source of concern, but you should not make too many plans just
yet.  The conventional wisdom seems to be to wait for a trend of three
consecutive PSA increases before initiating any more  treatments.  And
of course have the results verified; labs do make mistakes.

But Steve's right; you should consult with an oncologist.

--charlie

There are three main possibilities:

1. Its indolent disease that will never represent a significant risk.
In order to determine if this is the case one typically takes a series
of PSA tests to determine if the PSA has just risen to a new higher
static level or if its increasing over time.

2. Its localized in the prostate bed.  In this case one can have local
salvage treatments, typically radiation.  The two links to Doug
Scott's
case on this page are an example:
http://palpable-prostate.blogspot.com/2007/02/case-histories.html

3. Its advanced beyond local treatment in which case one can
consider androgen deprivation therapy (ADT).

See med onc for advice on #1 and #3 and rad onc for advice on #2.

---
The Palpable Prostate
http://palpable-prostate.blogspot.com

Two years, one week, and four days.... but who's counting?  :-)

First, I'm hoping against hope that you missed a decimal.  Frankly, I don't
think a 260-fold rise is possible in four months.

If it is 2.6, I would consider it a probably anomoly and ask for another
test.

If it is 0.26, I think I would calm down and wait three months to see what
it does.  If, in three months, it's 0.52, then Allen quite possibly still
has cancer.  And, since it waited 2½ years to show itself, it just might be
still curable with radiation.

That would be me, and a few others.  It's a damned shame, but it is not the
end of the world.  I can understand your anxiety.  I was where you are back
in 2001 (we were married 26 years at the time).  I'm still alive and there
is no reason to believe Allen won't be in much better shape in six years.

BTW, it's now time to look at his post-op biopsy (we all ignore it until
this happens).  I'm sure his T1c did not hold up.  Did his 3+4=7 Gleason?

Debbie,

You've already received some excellent advice.

As others have noted:

1. Allen may or may not have a recurrence of the cancer.

  0.1 is a little too low to be certain.

2. If it is a recurrence, it may or may not be dangerous.

  Liz reported that her husband has had a detectable but not
  increasing PSA for some years.  It is possible that all that
  is needed in that case is watchful waiting.

3. If it is dangerous, it may or may not be reachable by
  radiation.

  If it is reachable, i.e., it's a recurrence in the area of the
  prostate bed, then radiation may cure it.

4. If radiation isn't possible or doesn't cure it, follow on
  therapy may control the cancer for many years and
  prevent it from becoming fatal.

  And new therapies become available every few years.

The nurse's advice to wait until Allen reaches 1.0 sounds bad to
me.  If it is a dangerous recurrence, and it is still local, then
it is important to treat it BEFORE it escapes from the prostate
bed.  I seem to recall reading that odds of that happening are
worse after 1.0 than before it, though I'm not an expert on that
(or any of what I'm saying for that matter.)

So my bottom line advice is the same as Steve Jordan's.  Allen
should consult a medical oncologist who specializes in prostate
cancer, not a urological surgeon.  Consulting a radiation
oncologist who does prostate "salvage" therapy might also be a
good idea.

I should think Allen should now get frequent PSA tests so that
you can track exactly what is happening with the PSA and
have a better idea what category Allen is in and what the
best options are.

I'd also like to re-iterate Steve Kramer's point.  Steve is still
alive 6.5 years after a failed prostatectomy and almost 5 years
after failed salvage radiation.  His PSA is still undetectable
under hormone therapy and he has no symptoms.  He also still has
a fair number of treatment options to try if and when his PSA
goes up again, and more years to go if an when all treatment
fails.

Allen's situation might be serious, but there are still chances
that it's not serious, or if so that it's curable, or if not that
it's controllable to the point that he will live out a natural
lifespan.

Best of luck.

   Alan

Dear Debbie,

I am an anxious wife who has not been there, but I'm there right
now.   My husband had RP in 10/05 and 2 positive PSAs, one in Jan '07,
(.12) and another in Feb. '07 (.14).  He is due to have another one
ASAP.

Husb's surgeon suggested he wait the standard 3 mos. (from Feb) and
then another 3 mos. and see if there is an upward trend.  My friends
here advised that we not sit around and wait, that we consult some
good doctors right away.  Suggestions were a radiation oncologist and
a medical oncologist.  So the first thing I have to say is, you need
to be in the custody of an *oncologist*, not a urologist, at this
point.  Oncologists know more about whether and when to institute
salvage treatments (i.e., treatments after the primary treatment has
failed).

We didn't get these appts. done as fast as I would have liked (he had
to switch insurance), but by now we have seen a top radiation
oncologist in NYC, Dr. Peter Schiff, and a medical oncologist, Dr.
Daniel Petrylak.  Both seemed to think that we had not arrived a
moment too soon.  And they also both agreed that my husb should start
radiation treatment (IMRT) sooner than later.  The other day I said to
Dr. P., "We would like to get away for a few days, take a cruise to
the Pacific NW on May 6-11, I must see the Redwoods.  Would that be
okay?"   He actually had to think about it, and so we got the idea --
do this sooner or later.

I can't tell you what to do, but I can tell you these are among the
finest doctors in their field, and I liked them both and would
generally trust their judgment.  Especially impressive was Dr.
Petrylak.  He allowed my husb. to tape-record the meeting and was very
comfortable when I asked him questions based on advice that I told him
was given to me by other patients (and also told him that it was they
who overruled the doctor's advice and sent us here).  No attitude
problem there.

So, my husband's last PSA was .14 and both these doctors recommend
that salvage radiation be started ASAP.  They do not even want to wait
till 1.0.  Dr. P. stated his belief that patients do better when
radiation is started earlier.  Much earlier.

*Nevertheless the doc suggested doing one more PSA test just to be
sure*, and my husband needs to get his butt over there and get it
done.

However, I am going to tell you and everyone here that based on what I
have experienced and a lot of research that I've done, I want my
husband to be treated at Sloan-Kettering and no where else.  I won't
go into details, but you can pull up US News hospital rankings and see
that MSK is rated # 1 in the nation for cancer, while New York Presb-
Columbia lags at # 24.  That's about right.  When you hire a doctor,
you hire a hospital.  Don't forget it.

I had hoped that my husband could see a particular rad onc. at MSK,
but I was told he was not available for consult until July.  Then a
miracle happened:  I have had a nasty bug, fever, etc. for the last 2
weeks and finally went to my doc yesterday to get an antibiotic (Z-
pac) or something.  I have had this doctor for 20+ yrs. and he is the
finest, most decent person I know, and so I asked him for advice about
my husb.  Turned out, he said my dream doc was a very close friend of
his.  Now, husb has an appt. for Monday with the rad onc at MSK.  Am
thrilled.  Just cried for 1/2 hour to the supervisor at NY Hosp
Pathology Labs begging him to get us husb's surgical biopsy slides by
Monday so we could see the doc.  They said they will special-order
them from the warehouse. People are good.   MSK is a prof'l outfit,
they won't see you without your slides, they review everything,
(including initial biopsy slides) and it's that sort of thing that
makes them special.

I just want to say, Debbie, that I hope your husband does not have a
recurrence, but there is a good chance that he does.  His stats aren't
bad, but they're not great either.

Re: my husband's numbers: We were told he had a post-op Gl 4+3 and
that everything else was okay.  Clear margins, etc.

Subsequently, I had a real problem getting my husband's path report
from his doc, he just wouldn't give it up, that and other records..
Finally we got it, and I read it to be prepared before visiting the
oncs, and there it said that in plain Medicalese that husb had a
positive margin, possible extacapsular extension and perineural
invasion.

And to top that off, one doc we called last week for a consult asked
us to send husb's "operative report" and so we got that.  Surg had
told us he had spared both nerves, but report said otherwise.

*Based on the above, I urge every patient to get copies of all of
their medical records at the time they're generated  and to review
them carefully and be sure they understand them*.

Anyway, hopefully we will know more by Monday, and I would be happy to
share w/you the third doc's advice.  Just email me.

**One more thing:  My husband may well end up owing his life to
certain people here because he sought treatment early, and we both
thank you from the bottom of our hearts.  Before I went to see the
docs I reviewed a fat sheaf of papers which were letters sent to me in
response to a msg I had posted about husb's pos. PSA.   I am hoping
husb will personally thank each and every one of you when he has the
chance.**

Good luck.

Leah.