What your doctor doesn't know can kill you

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Alan Meyer - 16 Jan 2004 21:28 GMT

My roommate at the hospital yesterday was a guy who had just had
LRP. He told me the following story.

He is now 55 years old.

His father and uncle and his older brother had had prostate cancer.

At age 49 he started getting annual PSA tests and saving the
numbers, tracking them each year. Each year they went up.
At his last test, the number was 3.3. That was twice what it had
been the year before.

He asked his doctor what the PSA was and the doc said, Oh it's
in the normal range, you're in great shape.

"What was it?"

"Oh, right in the middle of the normal range."

"What was the number?"

"3.3 - right in the middle of the normal range."

My roommate, having done his research on this asked about
the PSA velocity. The doc said, "Don't worry about it, you're still
in the normal range."

After insisting on a consult with a urologist, the urologist said,
"You're DRE is normal, your PSA is in the normal range, don't
worry about it, you're fine."

After much more insisting, they did a biopsy and found cancer
in 3 of 12 cores. After the LRP the pathologist told him they
found 6 tumors in his prostate. His Gleason was 6 and his
margins were clear. His case was easy to treat. Had he not
been his own advocate he would have had a much worse case
by the time his doctors got around to doing something about it.

Alan

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JimBob - 17 Jan 2004 16:04 GMT

Wow,

If Alan's story didn't take so long to read it should be posted on
billboards around the country. After my diagnosis in mid. October and my
subsequent reading / research / newsgroup following and etc. this post
really made me think.

Now I tend to explain in the extreme , but only for clarity , the truth
usually lays somewhere in the middle BUT ! After reading the
experiences of others here and blending in my own I have come to the
conclusion that for early PCa's, its all about the skill of the
Urodoc/Surgeon ( I am also a fan of RRP for best chance of long-term
cure, *just my opinion* ).

I did a lot of research in my locality and short of going "down the
road" to Hopkins one of the best urodocs in the area was the one
recommended by my primary doc. He sorta had a jet pilot mentality and
backed it up with informal stats from his previous cases. His waiting
rooms were usually full and waits could be over an hour or better , why
? , cause he always sat with you til' you had all the info. and
hand-holding you needed. After all is said and done I also have the
sense that given the minimum equipment and assistance he could have done
my surgery on the kitchen table ( overstatement to make a point ) with
the same results !! My point here, in most early cases "IT'S THE SURGEON
STUPID" ...... so when doing your research don't get lost in the
hospital hype, It's sure easy to do !!

By the by , have not posted for a while but have been lurking daily. My
RP was 10/29 and just got my first PSA back last week. "Undetectable"
...... yeaaahhh, continence about 98% ..... yeaaahhh , erectile function
"Undetectable" ..... boooooooo ( was have problems pre-surgery anyway
due to long term sleep disorder so can't complain ).

This opinion does not necessarily represent those of the management !!!!

See ya around,
JimBob

> My roommate at the hospital yesterday was a guy who had just had
> LRP. He told me the following story.
[quoted text clipped - 35 lines]
>
> Alan

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Outlivecancer - 23 Jan 2004 17:00 GMT

I really agree,I'm not a DR.but DR's I
talk to are like you had a PSA of 2.9
and had cancer?and they don't know what a Gleason score is,mine was 7,.My
surgeon saved my life irritable dinosaur that he is he picked it up digitally
and said let's do a biopsy,another lesson stay with pros and watch your hmos.

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