Re: treatments for intermediate PC

[Guest guest]

Congratulations on coming up with a significantly better than average

understanding of PCa treatment choices, especially only after 5 weeks; 

however, some further "crunching" of the data is needed.   For

instance, Dr. Grimm's consortium study clearly shows that surgery

becomes a poorer treatment choice as a patients numbers go up so I

don't understand why surgery is still on your husbands "short"

treatment list?  The other major point is you can't ignore the

advantage of lower side effects associated, on average, with some

treatments versus others.  I believe you have already seen the

treatment comparisons in www.rcogpatients.com (Tables B

and C in the

summary section) but you may want to look again at the side effect

comparisons now that you and your husband are getting closer to a final

treatment selection.  I have made a few other comments below [in red] FYI.

Carl

 Anders wrote:

 

My husband and I are trying to sort out the best

treatment

choice for his particular case of intermediate risk cancer.  After

talking with quite a number of doctors

and looking at lots of studies, the choices are still confusing—no

surprise

there.  Top contenders for us right now

are surgery [??] and brachytherapy

+ EBRT (or maybe protons [??]). 

We would welcome the thoughts from any who

wish to share.  Warning: the following

post is pretty long. 

 

My husband was diagnosed with prostate cancer 5

weeks

ago.  I sent out a letter about his

situation back then.  His biopsy was

originally graded as Gleason 3/3 but a second opinion put it at 3/4. 

His CS is T2b (palpable tumor for the last 1

½ years, actually one side just feels sort of different, no real

nodule).  His positive cores are 5 out of 9 all one

side, 35% for the highest section (base). 

 

There are several things about his situation

that make me

concerned that the cancer might have gotten outside the prostate. 

There’s a 30% chance according to the Partin

tables, but I’ve heard from several doctors that they aren’t reliable [What scientific data do they cite for this

conclusion??].  Still, the fact that there’s some

Gleason 4,

one side of the prostate felt different for 1 ½ years (same side that

was

positive for PC), the smallness of the prostate (31cc) and the number

of

positive cores with one core being 35%, makes be concerned, even

without

reference to the Partin tables.

 

I realize that having cancer outside the

prostate isn’t the

end of the world or life.  Still, it

makes sense to choose the kind of therapy that gives the best chance of

biochemical free recurrence.

 

So, that’s a long preamble to my question, which

is:  What treatment gives the best cure rate or

greatest chance of biochemical free recurrence for intermediate grade

PC? [Don't forget to include side

effects in the comparison.]  OK, that’s a big

question which no one can

really answer so here’s some sub questions that might help address it.

 

I’ve approached this question two ways:

1) I’ve tried to find meta studies that analyze

success for

various kinds of treatment. 

2)  I’ve tried to find

peer-reviewed studies put out by the some of the best treatment centers

and

then have compared their results.

 

Regarding the first, the most comprehensive meta

comparison

I’ve found is Grimm’s article in the May 2011 PCRI Insights: 

Longterm Outcomes for Prostate Cancer

Therapy Choices (not peer-reviewed).

 

If you’re interested, here are two versions. 

The first is the full article published on

Grimm’s website, the second the PCRI article.  (I’ve

attached the full set of slides I got from Grimm’s

office.  They tell what the different studies are.)

 

http://www.prostatecancertreatmentcenter.com/ProstateCancer/ProstateCancerResultsStudyGroup.aspx

 

 

http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is14-2_p3-11.pdf

 

Their analysis shows that brachytherapy plus

IMRT typically has

the best success rate for intermediate grade PC.   So,

here’s my real question…..  Is it fair to compare studies

of surgery that

have the > 0.2 ng/ml PSA biochemical criterion for recurrence with

studies

of all other forms of treatment with the ASTRO criterion?   This

is what Grimm’s study does [He has informally

agreed to try to address that issue in the next few years]. 

To me that

seems like comparing apples to oranges, unless there’s some biological

reason

that the ASTRO cutoff for radiation would somehow be roughly equivalent

to the

> 0.2 PSA criteria.  

 

Maybe the >0.2 criteria for surgery is

comparable to

ASTRO for radiation since in surgery the prostate is removed while in

radiation

some prostate cells remain behind [not very

likely].   However, the studies I’ve found for

two of the top

brachytherapy centers

in the US

(Dattoli and RC Cancer Center) both use the > 0.2 ng/ml PSA criteria

for

biochemical recurrence [no, Dattoli primarily

uses ASTRO measures??] .   RC’s

ProstRcision booklet makes a big deal out of the importance of using

the >

0.2 ng/ml criteria.  They convert data

from other centers that use less stringent criteria and their

conversions

downgrade the “cure rates” of these other places by quite a bit. 

(Which also leaves the question, do they

downgrade too much? [yes in my view]) 

 

So I’m confused:  does

it or doesn’t it make sense to compare radiation studies that use the

ASTRO

criteria to surgery studies that use the >0.2 PSA criteria?   And

if the ASTRO makes for sense for

radiation in general then why does the Dattoli group [no] and the RC Cancer

Center

(Dr. Critz) use the >0.2 criteria and do very well with that?  

(Dattoli’s data show an 87% (2007) to  89%

(2009) cure rate for intermediate grade

cancer [only 300 to 350 patients and all EBRT

before Seeds, not the other way around].   Dr.

Critz’s 2004 paper [thousands of patients] shows

an

80% (2004) cure rate for intermediate

[probably a bit higher for men under 70 per the same study]. 

Their ProstRcision booklet (2010) claims a 88% cure rate for

low and

intermediate risk PC combined.   Again,

these all use the more stringent  0.2

criteria.)

 

Now, another line of thinking is this:  My

husband’s prostate is on the small side

for PCa, 31cc.  I think that means it’s

about 1 ½ inches in diameter.   I’ve

heard that radiation (brachytherapy and proton beam) treat the margin

around

the prostate.  Loma says they treat

a half inch margin.  So if a half inch

margin is treated in addition to the 1 ½ inch in diameter prostate,

that means

that the total area treated is over four times the size of the prostate.  

If any cancer has escaped, it makes sense

that increasing the treated area to such a degree would be much more

likely to

catch all the cancer than just treating the prostate, which I assume is

what

surgery does.  Surgeons can’t cut out a

full half inch margin, can they?   How much

extra can they cut off [not important as

surgery is not likely a good choice for your husband due to side

effects]?   On the other hand, surgeons at

least have

the advantage of being able to see or feel what they’re treating [again not a viable option when side effects are

factored in.  Need to focus your questions on the remaining

alternatives].

 

So this reasoning points towards the advantage

of

brachytherapy plus IMRT or proton beams [??] over

surgery.  But

I’m sure my thinking is too

simplistic.  So I welcome any thoughts

about this.   How do surgeons make sure

to get any little bits of cancer that has escaped the prostate [they do follow up treatment with external radiation

if microscopic PCa shows up at the surgical margins but again it is

likely not your better choice when you factor in side effects]? 

I’ve

heard from open surgeons that they can

feel the cancerous tissue and so cut out a bit more and from robotic

surgeons

that they can see the cancerous tissue.  Still, can they

really treat as far out as radiation?   How

can you compare the success of surgery

vs. brachytherapy plus IMRT for getting rid of cancer just outside the

prostate [compare peer reviewed 10 year

"disease free" reports]?   (I say brachy plus

only

because that’s what I’ve researched the most, because of Dr. Grimm’s

article.)

 

The bottom line is, I’d appreciate any thoughts

about the

best treatment for low intermediate risk PC.   Our

priorities are first- treat the cancer so it’s not a

problem later

on, second, minimize side effects of treatment [should

be a combined disease free and side effect comparison as attempted in

www.rcogpatients.com]. 

 

We welcome any thoughts or opinions.

 

 

[Guest guest]

Anders wrote:

> My husband and I are trying to sort out the best treatment

> choice for his particular case of intermediate risk cancer.

Hello

I'll begin by saying that I am tremendously impressed by the

quantity and quality of the research that you have done. I think

that very few patients have done as well. I know I didn't.

I'm not qualified to give any authoritative answers to your

questions. Unfortunately, as you have seen, even those who are

the most qualified have different opinions about the best

treatment. The field is rife with private interests, doctors who

make extraordinary claims, patients who are convinced that

whatever they did is the right thing for everyone else to do, and

studies that are carefully conducted to come out with the

conclusions most desired by the authors.

I think the first question a patient should ask is whether he

needs treatment at all. I don't recall your husband's age or

current PSA, but with five positive biopsy cores and Gleason 7, I

think most experts would say that he is at risk of death from

prostate cancer - though it could take ten or fifteen years or

more. If your husband is under 70 or so, treatment seems to be

warranted. If he's over that, it may depend on how much over,

how healthy he is, and how long he might live assuming no

prostate cancer. (Remember however that I am NOT an expert and

could well be wrong about this!)

> After talking with quite a number of doctors and looking at

> lots of studies, the choices are still confusing—no surprise

> there. Top contenders for us right now are surgery and

> brachytherapy + EBRT (or maybe protons).

It is my understanding that all three of those approaches have

fairly good results - when thy are done by really competent

doctors.

....

> My husband was diagnosed with prostate cancer 5 weeks ago. I

> sent out a letter about his situation back then. His biopsy

> was originally graded as Gleason 3/3 but a second opinion put

> it at 3/4. His CS is T2b (palpable tumor for the last 1 ½

> years, actually one side just feels sort of different, no real

> nodule). His positive cores are 5 out of 9 all one side, 35%

> for the highest section (base).

>

> There are several things about his situation that make me

> concerned that the cancer might have gotten outside the

> prostate. There’s a 30% chance according to the Partin tables,

> but I’ve heard from several doctors that they aren’t reliable.

My inexpert opinion is that the Partin tables are an average of

all cases. If you separated them into, for example, cases with

all positive cores on one side of the prostate versus diffuse

cancer found everywhere in the prostate, there might be

differences between the two groups. So, while I don't know if

the Partin tables are unreliable (I suspect they are reliable),

it still doesn't follow that we know how to apply them to any

specific case.

> ... What treatment gives the best cure rate or greatest chance of

> biochemical free recurrence for intermediate grade PC?

My personal, inexpert opinion is that all of the major treatments

- surgery, external beam radiation, brachytherapy, protons, are

capable of very good results. I personally suspect that the

biggest differences are found not between the treatments

themselves, but between the doctors. I suspect that the

difference between the best surgeon and a mediocre surgeon, or

between the best radiation oncologist and a mediocre radiation

oncologist, is likely to be greater, probably MUCH greater, than

between the best surgeon and the best rad onc.

> ... the most comprehensive meta comparison I’ve found is

> Grimm’s article in the May 2011 PCRI Insights: Longterm

> Outcomes for Prostate Cancer Therapy Choices (not

> peer-reviewed).

I stopped looking at Grimm's output after watching the

first video and hearing him described as " the best doctor in the

world " , (a direct quote) His patient had no pain, no cancer,

felt great and went out to a restaurant immediately after the

procedure, then played slot machines in the casino.

This highlights the problem of biased information.

People in high volume private practices are not the only ones

affected by this. Here's a quote from an article published by

the s Hopkins Department of Urology - one of the premier

centers in the world in treating prostate cancer:

" ... radical prostatectomy removes the entire prostate gland,

along with the seminal vesicles and some surrounding tissue.

It is the only treatment for localized prostate cancer

(cancer confined to the prostate) that has been proven to

reduce deaths from prostate cancer when compared with no

treatment. "

http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/laparoscopic-p\

rostatectomy_5769-1.html

And yet Hopkins has a department of radiation oncology which

treats prostate cancer and which claims in their own studies to

demonstrate increased survival times.

> ... So, here’s my real question….. Is it fair to compare

> studies of surgery that have the > 0.2 ng/ml PSA biochemical

> criterion for recurrence with studies of all other forms of

> treatment with the ASTRO criterion? This is what Grimm’s

> study does. To me that seems like comparing apples to oranges,

> unless there’s some biological reason that the ASTRO cutoff for

> radiation would somehow be roughly equivalent to the > 0.2 PSA

> criteria.

>

> Maybe the >0.2 criteria for surgery is comparable to ASTRO for

> radiation since in surgery the prostate is removed while in

> radiation some prostate cells remain behind....

I'm not an expert, but I think that's right. Radiation damages

the prostate tissue. Most of it dies, but not necessarily all of

it. It still typically expresses some PSA and can continue not

only to do that, but to have increases and decreases over time.

I was treated with radiation (HDR brachytherapy + 3DCRT + Lupron)

for a Gleason 4+3 cancer in the winter of 2003/2004. It took

five years (!) for my PSA to drop below 0.2. It went down as low

as 0.08 at its low point. Last April it went up to 0.26, then in

June down to 0.11.

Am I cured? Who knows, but I think I probably am. I think the PSA

" bounce " I saw in April was just prostatitis, something that is

apparently still possible after radiation.

However, from what I have read, the rate of recurrence is related

to the PSA " nadir " achieved. Men achieving a low point below 0.2

are less likely to recur than men achieving a low point below

0.4. But it's a matter of statistics. If a man never reaches

0.4 but lives another 20 or 30 years and never has a climbing,

runaway PSA, what difference does it make that he didn't reach

0.4 much less 0.2?

The numbers we see in the studies are presented in lieu of actual

survival statistics, which are much, much harder to gather. They

are using " biomarkers " as a substitute for survival because it's

just not practical to wait 30 years, follow every man who has

been treated, and determine his true cause of death.

As you noted, the " cure " rates that you see are better

characterized as " biochemical freedom from disease " , i.e., there

are no biomarkers (just PSA in most studies) indicating the

presence of cancer.

....

> The bottom line is, I’d appreciate any thoughts about the best

> treatment for low intermediate risk PC. Our priorities are

> first- treat the cancer so it’s not a problem later on, second,

> minimize side effects of treatment.

As I said earlier, as best as I can tell, all of the major

treatments, when done carefully by real experts, have similar

outcomes. The key thing is to get a real expert, one with great

experience and (at least equally important) great commitment to

his patients. For all of his bluster and hype, Grimm may

(or may not) be such a person. There are many who are.

Many good ones are found at research institutions. See for

example the NCI " Designated Cancer Centers " list at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Some are probably to be found at high profile private practices

like Grimm or Dattoli (though you may find that the guru himself

is now the businessman running the operation and the actual

procedures are performed by someone else.)

Some are even found toiling away at community hospitals with no

big names or big salaries but a keen intelligence and a real

commitment to their patients.

So where does that leave you?

I suggest that you interview doctors with long experience in the

field and pick one that you feel you can trust - one who sounds

like he knows what he's doing, who doesn't make outrageous

promises, who is candid about what can go wrong as well as what

can go right, who is willing to say " I don't know " when he

doesn't know, who thinks about your questions and answers them

carefully, and who takes his time to help you understand. I

figure (maybe incorrectly!) that a doctor who does that is also a

doctor who will try to do the right thing on the operating table

or in the radiation room.

For a great overview of other people's experiences, I recommend

Terry Herbert's website " You are Not Alone Now " at:

http://www.yananow.org/

For relatively unbiased scientific information, I recommend the

National Cancer Institute's web pages at:

http://www.cancer.gov/cancertopics/types/prostate

Their most technical information is at:

http://www.cancer.gov/cancertopics/pdq/treatment/prostate/HealthProfessional

Best of luck.

Alan

[Guest guest]

>

<snips>

>

> I realize that having cancer outside the prostate isn't the end of the world

> or life. Still, it makes sense to choose the kind of therapy that gives the

> best chance of biochemical free recurrence.

>

I am afraid is the end, Chris. Once the cancer escapes the prostate, it becomes

incurable.

PM

[Guest guest]

There are no absolutes with PCa. For instance, if it has only escaped

to just outside the prostate there is a reasonable chance that IMRT

after surgery could solve the problem (if the surgical margins had

microscopic PCa); or if a patient chose a treatment that also addressed

that 20% to 30% (on average) possibility of microscopic PCa just

outside the prostate such as with Seeds>IMRT, IMRT>Seeds, IMRT

only and a few others. Of course no one knows if it has spread further

unless it has already been detected in the extremities. Incurable OK,

but "the end" is not very representative for most men, including those

diagnosed with PCa.

parmenasmix wrote:

>

<snips>

>

> I realize that having cancer outside the prostate isn't the end of

the world

> or life. Still, it makes sense to choose the kind of therapy that

gives the

> best chance of biochemical free recurrence.

>

I am afraid is the end, Chris. Once the cancer escapes the prostate, it

becomes incurable.

PM

[Guest guest]

parmenasmix

>

....

> > I realize that having cancer outside the prostate isn't the

> > end of the world or life. Still, it makes sense to choose

> > the kind of therapy that gives the best chance of biochemical

> > free recurrence.

> >

>

> I am afraid is the end, Chris. Once the cancer escapes the

> prostate, it becomes incurable.

I agree with Carl's response that it is possibly curable if,

although outside the prostate, it is still localized within reach

of radiation - which is often the case for patients with positive

margins.

But beyond that, I agree that metastatic prostate cancer is

currently incurable, but I have to argue with the use of the

phrase " the end " . There are many men who have lived many years

with metastatic prostate cancer, including a number of them on

this mailing list - primarily just using hormone therapies. Some

of these men have never experienced a single symptom.

There are also a number of new therapies, Provenge and

Abiraterone, that have just recently been approved for which we

don't yet have long term information, but we do know that they

can extend life for men who have failed hormone therapies.

There are also new discoveries about PCa and other cancers that

are leading to very promising new therapies that will become

available in the next five to ten years. For example there are

new types of hormone therapy that work differently from the

existing ones and appear to continue working when conventional

types have failed. There are new anti-angiogenesis therapies

that have shown promise in multiple cancers - including prostate

cancer. There are new " targeted " therapies using monoclonal

antibodies that attach anti-cancer agents directly to cancer

cells while leaving other cells alone.

If I were a betting man I'd be inclined to bet that, except for

men diagnosed with advanced cancer, the average man diagnosed

with metastatic PCa today, and who gets good medical care, is

more likely to die of something else.

Alan

[Guest guest]

Hello

Gang:

[Guest guest]

Hello & the rest of us Prostate Cancer carriers. I

mentioned to Chuck Maack that today July 11th would be "scan" day

for me at one of the best hospitals around; that being the

University of Alabama School of Medicine. UAB as they are known

world wide. First they ran an IV and I was to return in 3 hours for

my "Full Body Scan". In the meantime I went back to the Kirklin

clinic for my CT scan. The CT scan was aimed at my mid section with

special attention toward the bladder & Pelvic region. It was ran

twice over the Bladder.  I hate to keep repeating myself but I was

diagnosed in 2003 with a Gleason of 7+3.  y'all will have to fill

out the chemical, or medical jargon. PSA went from 2.2 to 4.2 in one

year. Biopsy showed 5% involvement. "Watchful waiting" for two more

years. Another biopsy with 20% involvement, with Gleason about the

same. It hit 8.4 rapidly and I opted for de 'Vinnci surgery; but he

did offer me different choices. He said he would get an Oncologist

over hear now if you like. I refused the pellets but really didn't

know why in layman's terms. The only thing I am pissed about is the

fact that two of my best friends has Prostate Surgery with the same

method I had. They had very little incontinence, no

sexual problems. Same hospital,  but different Doctor. So Thursday I

get my results,.cross your fingers. O Yea, I have no family support

from two of my mid-forties sons. If not for my daughter I would be

in deep trouble mentally.  rody

Hello

I'll begin by saying that I am tremendously impressed by

the

quantity and quality of the research that you have done. I

think

that very few patients have done as well. I know I didn't.

I'm not qualified to give any authoritative answers to

your

questions. Unfortunately, as you have seen, even those who

are

the most qualified have different opinions about the best

treatment. The field is rife with private interests,

doctors who

make extraordinary claims, patients who are convinced that

whatever they did is the right thing for everyone else to

do, and

studies that are carefully conducted to come out with the

conclusions most desired by the authors.

I think the first question a patient should ask is whether

he

needs treatment at all. I don't recall your husband's age

or

current PSA, but with five positive biopsy cores and

Gleason 7, I

think most experts would say that he is at risk of death

from

prostate cancer - though it could take ten or fifteen

years or

more. If your husband is under 70 or so, treatment seems

to be

warranted. If he's over that, it may depend on how much

over,

how healthy he is, and how long he might live assuming no

prostate cancer. (Remember however that I am NOT an expert

and

could well be wrong about this!)

> After talking with quite a number of doctors and

looking at

> lots of studies, the choices are still confusing—no

surprise

> there. Top contenders for us right now are surgery

and

> brachytherapy + EBRT (or maybe protons).

It is my understanding that all three of those approaches

have

fairly good results - when thy are done by really

competent

doctors.

....

> My husband was diagnosed with prostate cancer 5 weeks

ago. I

> sent out a letter about his situation back then. His

biopsy

> was originally graded as Gleason 3/3 but a second

opinion put

> it at 3/4. His CS is T2b (palpable tumor for the last

1 ½

> years, actually one side just feels sort of

different, no real

> nodule). His positive cores are 5 out of 9 all one

side, 35%

> for the highest section (base).

>

> There are several things about his situation that

make me

> concerned that the cancer might have gotten outside

the

> prostate. There’s a 30% chance according to the

Partin tables,

> but I’ve heard from several doctors that they aren’t

reliable.

My inexpert opinion is that the Partin tables are an

average of

all cases. If you separated them into, for example, cases

with

all positive cores on one side of the prostate versus

diffuse

cancer found everywhere in the prostate, there might be

differences between the two groups. So, while I don't know

if

the Partin tables are unreliable (I suspect they are

reliable),

it still doesn't follow that we know how to apply them to

any

specific case.

> ... What treatment gives the best cure rate or

greatest chance of

> biochemical free recurrence for intermediate grade

PC?

My personal, inexpert opinion is that all of the major

treatments

- surgery, external beam radiation, brachytherapy,

protons, are

capable of very good results. I personally suspect that

the

biggest differences are found not between the treatments

themselves, but between the doctors. I suspect that the

difference between the best surgeon and a mediocre

surgeon, or

between the best radiation oncologist and a mediocre

radiation

oncologist, is likely to be greater, probably MUCH

greater, than

between the best surgeon and the best rad onc.

> ... the most comprehensive meta comparison I’ve found

is

> Grimm’s article in the May 2011 PCRI Insights:

Longterm

> Outcomes for Prostate Cancer Therapy Choices (not

> peer-reviewed).

I stopped looking at Grimm's output after watching

the

first video and hearing him described as "the best doctor

in the

world", (a direct quote) His patient had no pain, no

cancer,

felt great and went out to a restaurant immediately after

the

procedure, then played slot machines in the casino.

This highlights the problem of biased information.

People in high volume private practices are not the only

ones

affected by this. Here's a quote from an article published

by

the s Hopkins Department of Urology - one of the

premier

centers in the world in treating prostate cancer:

"... radical prostatectomy removes the entire prostate

gland,

along with the seminal vesicles and some surrounding

tissue.

It is the only treatment for localized prostate cancer

(cancer confined to the prostate) that has been proven to

reduce deaths from prostate cancer when compared with no

treatment."

http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/laparoscopic-prostatectomy_5769-1.html

And yet Hopkins has a department of radiation oncology

which

treats prostate cancer and which claims in their own

studies to

demonstrate increased survival times.

> ... So, here’s my real question….. Is it fair to

compare

> studies of surgery that have the > 0.2 ng/ml PSA

biochemical

> criterion for recurrence with studies of all other

forms of

> treatment with the ASTRO criterion? This is what

Grimm’s

> study does. To me that seems like comparing apples to

oranges,

> unless there’s some biological reason that the ASTRO

cutoff for

> radiation would somehow be roughly equivalent to the

> 0.2 PSA

> criteria.

>

> Maybe the >0.2 criteria for surgery is comparable

to ASTRO for

> radiation since in surgery the prostate is removed

while in

> radiation some prostate cells remain behind....

I'm not an expert, but I think that's right. Radiation

damages

the prostate tissue. Most of it dies, but not necessarily

all of

it. It still typically expresses some PSA and can continue

not

only to do that, but to have increases and decreases over

time.

I was treated with radiation (HDR brachytherapy + 3DCRT +

Lupron)

for a Gleason 4+3 cancer in the winter of 2003/2004. It

took

five years (!) for my PSA to drop below 0.2. It went down

as low

as 0.08 at its low point. Last April it went up to 0.26,

then in

June down to 0.11.

Am I cured? Who knows, but I think I probably am. I think

the PSA

"bounce" I saw in April was just prostatitis, something

that is

apparently still possible after radiation.

However, from what I have read, the rate of recurrence is

related

to the PSA "nadir" achieved. Men achieving a low point

below 0.2

are less likely to recur than men achieving a low point

below

0.4. But it's a matter of statistics. If a man never

reaches

0.4 but lives another 20 or 30 years and never has a

climbing,

runaway PSA, what difference does it make that he didn't

reach

0.4 much less 0.2?

The numbers we see in the studies are presented in lieu of

actual

survival statistics, which are much, much harder to

gather. They

are using "biomarkers" as a substitute for survival

because it's

just not practical to wait 30 years, follow every man who

has

been treated, and determine his true cause of death.

As you noted, the "cure" rates that you see are better

characterized as "biochemical freedom from disease", i.e.,

there

are no biomarkers (just PSA in most studies) indicating

the

presence of cancer.

....

> The bottom line is, I’d appreciate any thoughts about

the best

> treatment for low intermediate risk PC. Our

priorities are

> first- treat the cancer so it’s not a problem later

on, second,

> minimize side effects of treatment.

As I said earlier, as best as I can tell, all of the major

treatments, when done carefully by real experts, have

similar

outcomes. The key thing is to get a real expert, one with

great

experience and (at least equally important) great

commitment to

his patients. For all of his bluster and hype, Grimm

may

(or may not) be such a person. There are many who are.

Many good ones are found at research institutions. See for

example the NCI "Designated Cancer Centers" list at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Some are probably to be found at high profile private

practices

like Grimm or Dattoli (though you may find that the guru

himself

is now the businessman running the operation and the

actual

procedures are performed by someone else.)

Some are even found toiling away at community hospitals

with no

big names or big salaries but a keen intelligence and a

real

commitment to their patients.

So where does that leave you?

I suggest that you interview doctors with long experience

in the

field and pick one that you feel you can trust - one who

sounds

like he knows what he's doing, who doesn't make outrageous

promises, who is candid about what can go wrong as well as

what

can go right, who is willing to say "I don't know" when he

doesn't know, who thinks about your questions and answers

them

carefully, and who takes his time to help you understand.

I

figure (maybe incorrectly!) that a doctor who does that is

also a

doctor who will try to do the right thing on the operating

table

or in the radiation room.

For a great overview of other people's experiences, I

recommend

Terry Herbert's website "You are Not Alone Now" at:

http://www.yananow.org/

For relatively unbiased scientific information, I

recommend the

National Cancer Institute's web pages at:

http://www.cancer.gov/cancertopics/types/prostate

Their most technical information is at:

http://www.cancer.gov/cancertopics/pdq/treatment/prostate/HealthProfessional

Best of luck.

Alan

[Guest guest]

parmenasmix you say: <snip> Once

the cancer escapes the prostate, it becomes incurable. <snip>

Depends on your definition of ‘cure’.

Some tumors that are contained in the gland and removed completely turn out to

be ‘incurable’, depending on definition of the term.

Prostate cancer that has ‘escaped

the prostate’ is not always fatal, a term that is easier to define than ‘cure’

and can be managed for many years, often until the man passes on from one of

the other many causes that kill 97% of men.

To quote Willet Whitmore “.Growing old is invariably fatal while prostate

cancer is only sometimes so.”

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of parmenasmix

Sent: Tuesday, 12 July 2011 12:37

AM

To: ProstateCancerSupport

Subject:

Re: treatments for intermediate PC

>

<snips>

>

> I realize that having cancer outside the prostate isn't the end of the

world

> or life. Still, it makes sense to choose the kind of therapy that gives

the

> best chance of biochemical free recurrence.

>

I am afraid is the end, Chris. Once the cancer escapes the prostate, it becomes

incurable.

PM

[Guest guest]

On 7/11/11, wrote, in pertinent part:

> First they ran an IV and I was to return in 3 hours

> for my " Full Body Scan " .

Sounds like a " nuclear bone scan. "

> I hate to keep repeating

> myself but I was diagnosed in 2003 with a Gleason of 7+3.

Sorry, , that is an incorrect notation for a Gleason score.

The Gleason score is the sum of two elements as determined by a

(hopefully) competent pathologist. (S)he wrote a report on your

specimens and I strongly recommend that you get a copy of it.

You have the legal right to copies of all your documents, and

should make sure you get them.

You don't have to understand every word. That should come later,

IF you do your homework.

> I refused the pellets but really didn't know why in

> layman's terms.

I recommend that you figure it out. You don't want to decline a

treatment (tx) that might be helpful.

> The only thing I am pissed about is the fact that

> two of my best friends has Prostate Surgery with the same method

> I had. They had very little, no sexual problems.

It is very important to understand that we are each different,

and *so are our cancers*.

It is useless and misleading to compare A's tx results with B's.

Here's my essay, " For the New Folks: "

Welcome to the club no one wants to join.

I have some suggestions that will help to make well-informed

decisions.

Anecdotes contributed by other patients can be interesting, but

should never, ever, be relied upon as authority for one's own

decisions. In other words, what helps me might harm you and vice

versa.

" Find people who are more interested in helping you to learn than

teaching you what *they* think you need to know. "

-- Young, PCa Mentor

Phoenix 5

There is a lot to do.

(1) If applicable, I recommend having the biopsy specimens

examined by

a pathology lab that specializes in prostate cancer (PCa). Everything

that is done from here on depends upon the accuracy of the Gleason

scoring. Here is a list of such labs:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800] 328-2666 (select 5 for client services)

Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162

Jon Oppenheimer (Tennessee) [800] 881-0470

Lucia (303)724-3470

This is a " second opinion " and should be covered by

insurance/Medicare. The cost, last I heard, was about $500. More

if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the

patient and not the medic nor the lab. Sometimes it is necessary to

educate them on that point.

(2) The authoritative website of the Prostate Cancer Research

Institute (PCRI) at http://www.prostate-cancer.org/pcricms/

is an excellent beginning.

See also http://www.prostate-cancer.org/pcricms/node/126 if newly

diagnosed.

Some access to medics who specialize in treatment (tx) of PCa are

listed via

this portal: http://www.prostate-cancer.org/pcricms/node/38

If a particular medic is not suitable due to distance (but there

are men who travel thousands of miles for treatment) or

otherwise, there is no harm and much possible gain in simply

asking for a referral.

There are also men whose primary medic is some distance away, but

who receive their routine treatment (tx) near home.

(3) I heartily recommend this comprehensive text on PCa: _A

Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered

Patient's Guide " by medical oncologist and PCa specialist

B. Strum, MD and PCa warrior

Donna Pogliano. It is available from the PCRI website and the

like, as

well as Amazon (30+ five-star reviews), & Noble, and

bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local

chapters of the international support group Us Too can be found via

their website at http://www.ustoo.com/chapter_nearyou.asp

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. "

[Guest guest]

parmenasmix wrote:

....

> Even though I realize you folks are merely trying to be

> supportive, I think it is more important to concentrate on the

> core issue. Let me put it another way, rather than PCa

> 'escaping' the prostate. Once the cancer has metastasized

> (spread) to other parts of the body, it cannot be cured by

> current medical science. See, for example,

>

> http://www.nature.com/pcan/journal/v7/n4/full/4500747a.html

>

> The core issue, to my mind, is that we need to do everything

> possible to keep the cancer from escaping the prostate. To

> think we still have options after that event is very

> misleading. Less than 30% of patients with metastasized

> prostate cancer live even five years.

>

>http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-survi\

val-rates

>s

PM,

I think that you are right to be realistic. I think it's better

if people know all of the facts, including the unpleasant ones.

Having said that however, I'd like to add some considerations to

the 31% 5-year survival number for men with distant metastases at

the time of diagnosis as described in the National Cancer

Institute statistics cited above.

I suspect that the majority of men who have distant metastases at

the time of diagnosis are diagnosed only because they have

symptoms. They go to a doctor because of back pain or difficulty

urinating. The doctor prescribes ibuprofen or Flomax, and only

later does a specialist order a PSA test, see numbers in the

hundreds or thousands, and realize that the man actually has

metastatic cancer.

Some of these men have extremely aggressive cancer. Many have

cancers that would have been detected by a PSA test 10 years or

more before if one had been done. Their situation is very

different from that of a man who is diagnosed early with a

Gleason 6 or 7 cancer and a PSA below, say, 20. It is possible

that such a man does already have distant metastases - though

they are too small to detect with a bone scan or MRI. It is

unlikely that surgery or radiation will cure him. But I don't

think he's likely to be in the group of men who die within five

years of diagnosis. His disease is _years_ away from being as

advanced as that of the guy with bone pain. The hormone therapy

given to him when his surgery or radiation fails will be

operating on tiny pockets of cancer, not large runaway colonies

of cells in bones and vital organs. It is likely to be much more

effective at suppressing the cancer and holding it down than it

will be for the guy who already has a tumor burden 100 or 1000

times greater.

So, while I understand that many men are diagnosed too late to

get much benefit from treatment, I'm still optimistic for those

men who were diagnosed early, even if they already have a small

amount of systemic disease.

Alan