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From: doug.gosling on 15 Aug 2008 13:33
I have posted several times in the past when I was first diagnosed,
when I recurred, and to discuss various symptoms. I've also reached
out for information or thoughts relevant to my very low PSA. Well, I
found out this week that I have bone mets and have started hormone
therapy. Not the path I wanted to be on (none of us do) but it is
what it is.

I thought, however, that I would share some of the details of my case,
for general interest and also in the hope that it will help others who
experience false negative PSA results. Below are some facts and
dates:

DX 10/15/02 @ age 49 (by DRE)
PSA 1.26; Gleason 6; T2a
RP 12/04/02; one nerve spared
PSA 2003-6: Undetectable
PSA 09/14/07: 0.13
PSA 11/05/07: 0.15
Completed SRT 01/08
PSA 04/21/08: 0.15
PSA 07/8/08: 0.49
PSA 07/31/08: 0.62
Bone Mets found
Started Lupron

Here's the thing. Most of the studies and all of the statistics
relevant to PCa are based on "normal" PSA numbers and their
behaviors. There is nothing I have found that deals with numbers as
low as mine. I was DXd by DRE with a PSA of 1.26, yet the cancer (on
pathology) was 40% of the volume. Because of this, I have always
mistrusted the statistics and was never comfortable hearing doctors
tell me that I would be fine since my PSA and Gleason were so low.
When I asked about the low PSA, the answer was always "We don't
know". I suspected that either me or my cancer simply didn't express
much PSA.

When I recurred last November, almost 5 years later, my PSA was 0.15.
Frankly, I was surprised that it showed at all. The doctor told me to
come back again in 3 months and not to worry too much because the
number was low and took a long time to reappear. In fact, he
suggested it might even be related to a new way of doing the test
(this was in a major cancer hospital). I wouldn't accept this for the
reason above, and requested an immediate bone scan, CT Scan and a
referral to a radiation oncologist. The scans were clear but I
started on a round of salvage radiation on the chance that it was a
local recurrence. This was completed by the time I would have come
back for my next appointment.

My PSA, three months later, in April was 0.15, unchanged from prior to
SRT. I was told that sometimes it takes longer for the radiation to
work, so come back in 3 months. In early July, my PSA was 0.49.
Clearly, something was going on although the doctor said not to worry
too much because the number was low and my Gleason was low. The short
doubling rate didn't seem to worry them. I looked at the numbers a
different way - 0.49 was more than triple the previous reading and
more than a third of my initial reading with a 40% tumor! Relatively
speaking, I was concerned. The doctor agreed to do a bone scan and an
MRI because I was experiencing some lower back pain and numbness in my
legs (my GP told me it was probably "mechanical"). I was told that it
usually takes many years to develop bone mets or other visible
symptoms of metastasis from the first rise in PSA, so don't worry too
much. I heard, for the 3rd or 4th time, that, "I have never seen
anyone with bone mets with a PSA lower than 20".

So I had the scans and another PSA test 3 weeks later. The PSA had
gone up to 0.62 in those three weeks and was now half of what it was
before my RP. The bone scan showed a nice bright hot spot in my lower
back, precisely where I was feeling the pain. The MRI verified it.
Since my previous bone scan in November was clear, I thought this was
pretty fast. They started me immediately on Lupron (with 2 weeks of
Casodex) and will radiate the hot spot next week to reduce the pain
which seems to be getting worse every day. In another week, I am
having a CT Scan to see if there is anything in my lymph nodes or
other organs.

In researching this, I did find a couple of recent studies which
indicated that tumor volume could be an independent predictor of
aggressiveness. I have also read that cancer cells mutate over time
and that some low-PSA expressing forms of cancer can be very
aggressive, in spite of my original Gleason score. The doctor finally
agreed that my low-PSA behaved differently from "normal" PSA and
suggested I was a non-secretor who expressed little PSA. On this
point, I felt validated as I had been saying this all along (not with
certainty, but as a real possibility). That was the only positive
thing in all this.

So what are the odds that I will find something with the CT Scan?
Nobody knows. What are the odds that hormone therapy works well for
me? Nobody knows. How long do I have before hormone therapy stops
working? Nobody knows. I'm not angry at anyone. This is just the way
it is and I'm glad no one is telling me not to worry anymore, or that
I will be fine. My PSA seems to be rising rapidly and I developed
bone mets very quickly, so I am concerned about where I go from here.

The lesson in all of this, for anyone else with ultra-low PSA, is not
to rely on all of the statistics because they are not relevant to
you. And don't let the doctors determine your treatments and next
steps based on these statistics or their personal experience. If I
had done that, I would still be going back every 3 months being told
that, even though the number was rising, it was still too low to be
concerned. Every step of the way, I insisted on the scans and
treatments that were appropriate and asked for them immediately. And
now I know that I had every right to be worried and mistrustful of the
numbers. I know that everyone is different and that I may be one in a
million, but I think there must be more men out there waiting because
their doctors are telling them their Gleason and PSA is too low to
worry. Don't accept, "You"ll be fine."

I'll post an update when I get my next set of results.

Doug
blog: talkingaboutcancer.com



From: Steve Jordan on 15 Aug 2008 14:08
On August 15, Doug wrote:

> I have posted several times in the past when I was first diagnosed,
> when I recurred, and to discuss various symptoms. I've also reached
> out for information or thoughts relevant to my very low PSA. Well, I
> found out this week that I have bone mets and have started hormone
> therapy. Not the path I wanted to be on (none of us do) but it is
> what it is.

(snip)

Is there a genuine cancer specialist, a medical oncologist, involved?
Preferably one who is well-trained in tx of PCa.

I have to say that the record Doug recites does not tell me much of a
positive nature about his medic.

Low PSA and mets could be a sign of neuroendocrine or other such
dedifferentiated or small-cell PCa.

Simple blood tests, which are rarely done by anyone not a PCa
specialist, could have provided an alert as to what was happening.
Perhaps it is not too late to construct a biological snapshot that will
help to determine what to do.

Here are some tests:

PAP: prostatic acid phosphatase (normal = 0-3.5)
CGA: chromogranin-A (normal = <14.3)
NSE: neuron-specific enolase (normal = <12.5)
CEA: carcino-embryonic antigen (normal = <4.0)
-- Per Strum & Pogliano, _A Primer on Prostate Cancer_ 2nd ed., page F11.

If elevated, they would indicate mutated disease as above.

There is nothing new about any of this. Here is a 1998 article (there
are plenty of other of the same sort) from the encyclopedic website of
the Prostate Cancer Research Institute (PCRI):
http://www.prostate-cancer.org/education/staging/correct.html

A listing of some PCa specialists can be found via this gateway:
http://www.prostate-cancer.org/resource/special.html

Take-home lesson (which I did not learn until almost too late): PSA is
*not* the only relevant marker for PCa status.

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."

From: Steve Kramer on 15 Aug 2008 15:54
This is terrible news, Doug. I just can't believe it.

<doug.gosling(a)gmail.com> wrote in message
news:5610c6c9-2ae7-4a89-a01b-d1f3e0b982c9(a)d1g2000hsg.googlegroups.com...
>I have posted several times in the past when I was first diagnosed,
> when I recurred, and to discuss various symptoms. I've also reached
> out for information or thoughts relevant to my very low PSA. Well, I
> found out this week that I have bone mets and have started hormone
> therapy. Not the path I wanted to be on (none of us do) but it is
> what it is.
>
> I thought, however, that I would share some of the details of my case,
> for general interest and also in the hope that it will help others who
> experience false negative PSA results. Below are some facts and
> dates:
>
> DX 10/15/02 @ age 49 (by DRE)
> PSA 1.26; Gleason 6; T2a
> RP 12/04/02; one nerve spared
> PSA 2003-6: Undetectable
> PSA 09/14/07: 0.13
> PSA 11/05/07: 0.15
> Completed SRT 01/08
> PSA 04/21/08: 0.15
> PSA 07/8/08: 0.49
> PSA 07/31/08: 0.62
> Bone Mets found
> Started Lupron
>
> Here's the thing. Most of the studies and all of the statistics
> relevant to PCa are based on "normal" PSA numbers and their
> behaviors. There is nothing I have found that deals with numbers as
> low as mine. I was DXd by DRE with a PSA of 1.26, yet the cancer (on
> pathology) was 40% of the volume. Because of this, I have always
> mistrusted the statistics and was never comfortable hearing doctors
> tell me that I would be fine since my PSA and Gleason were so low.
> When I asked about the low PSA, the answer was always "We don't
> know". I suspected that either me or my cancer simply didn't express
> much PSA.
>
> When I recurred last November, almost 5 years later, my PSA was 0.15.
> Frankly, I was surprised that it showed at all. The doctor told me to
> come back again in 3 months and not to worry too much because the
> number was low and took a long time to reappear. In fact, he
> suggested it might even be related to a new way of doing the test
> (this was in a major cancer hospital). I wouldn't accept this for the
> reason above, and requested an immediate bone scan, CT Scan and a
> referral to a radiation oncologist. The scans were clear but I
> started on a round of salvage radiation on the chance that it was a
> local recurrence. This was completed by the time I would have come
> back for my next appointment.
>
> My PSA, three months later, in April was 0.15, unchanged from prior to
> SRT. I was told that sometimes it takes longer for the radiation to
> work, so come back in 3 months. In early July, my PSA was 0.49.
> Clearly, something was going on although the doctor said not to worry
> too much because the number was low and my Gleason was low. The short
> doubling rate didn't seem to worry them. I looked at the numbers a
> different way - 0.49 was more than triple the previous reading and
> more than a third of my initial reading with a 40% tumor! Relatively
> speaking, I was concerned. The doctor agreed to do a bone scan and an
> MRI because I was experiencing some lower back pain and numbness in my
> legs (my GP told me it was probably "mechanical"). I was told that it
> usually takes many years to develop bone mets or other visible
> symptoms of metastasis from the first rise in PSA, so don't worry too
> much. I heard, for the 3rd or 4th time, that, "I have never seen
> anyone with bone mets with a PSA lower than 20".
>
> So I had the scans and another PSA test 3 weeks later. The PSA had
> gone up to 0.62 in those three weeks and was now half of what it was
> before my RP. The bone scan showed a nice bright hot spot in my lower
> back, precisely where I was feeling the pain. The MRI verified it.
> Since my previous bone scan in November was clear, I thought this was
> pretty fast. They started me immediately on Lupron (with 2 weeks of
> Casodex) and will radiate the hot spot next week to reduce the pain
> which seems to be getting worse every day. In another week, I am
> having a CT Scan to see if there is anything in my lymph nodes or
> other organs.
>
> In researching this, I did find a couple of recent studies which
> indicated that tumor volume could be an independent predictor of
> aggressiveness. I have also read that cancer cells mutate over time
> and that some low-PSA expressing forms of cancer can be very
> aggressive, in spite of my original Gleason score. The doctor finally
> agreed that my low-PSA behaved differently from "normal" PSA and
> suggested I was a non-secretor who expressed little PSA. On this
> point, I felt validated as I had been saying this all along (not with
> certainty, but as a real possibility). That was the only positive
> thing in all this.
>
> So what are the odds that I will find something with the CT Scan?
> Nobody knows. What are the odds that hormone therapy works well for
> me? Nobody knows. How long do I have before hormone therapy stops
> working? Nobody knows. I'm not angry at anyone. This is just the way
> it is and I'm glad no one is telling me not to worry anymore, or that
> I will be fine. My PSA seems to be rising rapidly and I developed
> bone mets very quickly, so I am concerned about where I go from here.
>
> The lesson in all of this, for anyone else with ultra-low PSA, is not
> to rely on all of the statistics because they are not relevant to
> you. And don't let the doctors determine your treatments and next
> steps based on these statistics or their personal experience. If I
> had done that, I would still be going back every 3 months being told
> that, even though the number was rising, it was still too low to be
> concerned. Every step of the way, I insisted on the scans and
> treatments that were appropriate and asked for them immediately. And
> now I know that I had every right to be worried and mistrustful of the
> numbers. I know that everyone is different and that I may be one in a
> million, but I think there must be more men out there waiting because
> their doctors are telling them their Gleason and PSA is too low to
> worry. Don't accept, "You"ll be fine."
>
> I'll post an update when I get my next set of results.
>
> Doug
> blog: talkingaboutcancer.com
>
>
>


From: kh on 15 Aug 2008 20:28
On Aug 15, 1:33 pm, doug.gosl...(a)gmail.com wrote:
> ...  I was told that it
> usually takes many years to develop bone mets or other visible
> symptoms of metastasis from the first rise in PSA, so don't worry too
> much.  I heard, for the 3rd or 4th time, that, "I have never seen
> anyone with bone mets with a PSA lower than 20".

Here's my PSA history.

10/17/2001 9.6
10/9/2002 10.8 Negative 6-way biopsy
3/2/2004 10.2 Positive biopsy, start Lupron
6/10/2004 11.6 Lupron Flare
10/7/2004 4.3
11/15/2004 0.1 IMRT and Seeds.
2/15/2005 0.1
6/10/2005 0.4
9/19/2005 1
12/20/2005 1.2
3/14/2006 2.2
8/18/2006 6.4
12/11/2006 21.5 Trouble breathing,
3/2/2007 34 oxygen debt, walking 1 block or climbing 1 flight of
stairs.
4/11/2007 46
5/8/2007 61.6 biopsy, lymph nodes, chest. Back on Lupron, Casodex
5/29/2007 21.6
6/26/2007 1.3
8/30/2007 0.6
11/1/2007 8.4 Lupron fails, drop Casodex
12/4/2007 7.5 back pain starts.
1/2/2008 11 literally crawling out of bed from the pain.
1/30/2008 22.7 radiation to spine, 3 weeks
3/10/2008 12.82 radiation drops PSA
4/11/2008 18 start Taxotere
5/12/2008 11
6/2/2008 5.6
6/20/2008 3.6
7/15/2008 2.2
8/5/2008 1.5

These numbers are very interesting on an X-Y graph. 30 day doubling
times.

The jump from 8/30/2007 PSA 0.6, to 11/1/2007 PSA 8.4 is startling.
This was on Lupron AND Casodex. It just took off.

You can't turn your back on this thing.

-kh
From: Alan Meyer on 15 Aug 2008 22:00
doug.gosling(a)gmail.com wrote:
> I have posted several times in the past when I was first diagnosed,
> when I recurred, and to discuss various symptoms. I've also reached
> out for information or thoughts relevant to my very low PSA. Well, I
> found out this week that I have bone mets and have started hormone
> therapy. Not the path I wanted to be on (none of us do) but it is
> what it is.
> ...

I'm really sorry to hear this Doug.

I don't know where you live, but if you are anywhere near
an institution that does research on prostate cancer, perhaps
they'd be interested in learning more about your cancer and
able to try something that is well tailored to your case.

If you're near Bethesda Maryland, you might contact the
National Cancer Institute. In New York there's Sloan-
Kettering. In Houston, M.D. Anderson. In Baltimore, Johns
Hopkins, and so on. Many, probably most, of the big cities
have teaching and research hospitals with people doing research
on cancer who are more up on unusual conditions than local
doctors are likely to be.

I wish you the best of luck with this. Thank you for the report
and please keep us posted.

Alan
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