Re: Re: Post RP - PSA Rising

[Guest guest]

anohiopicker wrote:

> Can anything else cause the rising PSA? Which you said a

> urinary infection could do.

Personally, I'm not optimistic about this being a bacterial

infection. As Chuck said, the doc would have had to have left a

significant amount of prostate tissue behind. I suppose it's

possible. However if he left tissue behind, it might very well

have cancer in it. I think it's more likely that there would be

cancer in the area outside the excised prostate, for example in

the seminal vesicles. Also, if it were prostatitis, I would

expect the PSA to stop rising but yours, although it has gone

down slightly at two of the readings, does have a general upward

trend.

It is also my understanding that when PSA goes above 0.2 after

surgery, most experts consider that a recurrence.

> And, what they do next? Which you also answered.

Speaking personally again, I think I'd want to visit a radiation

oncologist now, at least for a consultation, and not wait for the

PSA to reach 1.0. I saw a study once that said salvage radiation

is most likely to be effective when the PSA is below 0.4. After

2.0 it's rarely curative.

I'm not saying that you still have cancer for sure - though it

seems pretty likely given your latest PSA is well above 0.2. I'm

also not saying that you should have radiation. In the first

place, your cancer appears to be slow growing and might never

trouble you, and in the second place, salvage radiation is said

to have a little less than a 50/50 chance of working even when

done very early.

Just as with surgeons, it's important to find a good radiation

oncologist. That's not always easy to do. If you trust your

urologist, ask him for a recommendation. If you're near one of

the big teaching hospitals, they are often a good bet. There is

a list of NCI recommended centers at:

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

There are two in Ohio, one in Columbus and one in Cleveland, and

also some in Indiana and Pennsylvania. There are also some other

great places in Ohio like the Cleveland Clinic that aren't on the

NCI list.

If you visit one of the big centers, I recommend you try to

schedule appointments with both a medical oncologist with lots of

PCa experience, and a radiation oncologist with lots of PCa

experience. It would be wonderful if you could actually have

them both in the same room at the same time, but I assume that

won't be possible.

> Do they (the docs) have the ability to " take pictures " of

> what's " growning on " down there, or is it just " cause and

> effect " testing of various levels of juices running in my

> veins???

I don't know the answer to that. As Chuck said, all of the

imaging techniques only work when the amount of cancer reaches a

certain level, and yours may be below that level. However it is

possible that some imaging or, as Chuck suggested, some blood

tests, will help with a determination.

> Again, I apologize for not being more " cerebral " about my

> participation in the Group.

I don't see anything non-cerebral in your posting. Your

questions and your description of your situation both look highly

intelligent to me. You're doing just fine in that department.

> It's just that I " was " soooo depressed my first couple years

> after RP that I had to " drop out " of all the " doom and gloom "

> reading

It's easy to get depressed with this damned disease. However,

assuming that you still have cancer, here are some things that

might cheer you up.

1. It's still very small.

2. It's _very_ slow growing. You've gone from 0.19 to 0.32 in a

period of two years. At that rate of increase, your PSA would

take ten years to reach 10.0, which is still fairly low.

3. It might be treatable with radiation.

4. It is almost certainly treatable with drugs. You might not

even need " heavy " drugs. It may be that drugs like Dutasteride,

Casodex, or estradiol could do all you need. And if they're not

enough then the heavy duty ADT drugs like Lupron can be very

effective.

Chuck was diagnosed in 1992. Terry Herbert and Metcalfe

were both diagnosed in the mid-90s. All of them are still alive

and kicking in spite of still having cancer. Many others on this

list and in other forums that I've visited have lived 15 years or

longer, some of them with cancer that was more widespread and

more aggressive than yours. So even if you just get medical

(i.e. drug) treatment, I would give odds on your living on into

old age and dying of something other than prostate cancer, very

possibly without ever experiencing a single symptom from the

cancer.

You've got a lot of life ahead of you. I recommend that you seek

some expert medical advice, but also very strongly recommend that

you treat your condition as one of the unfortunate side effects

of living, but not the main business of life. Don't allow

yourself to stop living because you're afraid of dying. After

all, when we were children we all learned that we were going to

die. If we let that ruin our zest for life we'd be done before

we even got started.

Take a firm interest in life. Do the things you like to do. Be

with the people you like to be with. Do things that are

important to you. It's all still there for the taking. Don't

leave it on the table.

> - and, then periodically touch base with the " long timers " like

> Steve Jordan and Alan Meyers - to see if I'm still alive. LOL

>

> Thanks for your help,

I'm very glad if any of us are helping. Helping each other is

one of the things that, for me, makes living worth while.

Best of luck.

Alan

[Guest guest]

anohiopicker wrote:

> Can anything else cause the rising PSA? Which you said a

> urinary infection could do.

Personally, I'm not optimistic about this being a bacterial

infection. As Chuck said, the doc would have had to have left a

significant amount of prostate tissue behind. I suppose it's

possible. However if he left tissue behind, it might very well

have cancer in it. I think it's more likely that there would be

cancer in the area outside the excised prostate, for example in

the seminal vesicles. Also, if it were prostatitis, I would

expect the PSA to stop rising but yours, although it has gone

down slightly at two of the readings, does have a general upward

trend.

It is also my understanding that when PSA goes above 0.2 after

surgery, most experts consider that a recurrence.

> And, what they do next? Which you also answered.

Speaking personally again, I think I'd want to visit a radiation

oncologist now, at least for a consultation, and not wait for the

PSA to reach 1.0. I saw a study once that said salvage radiation

is most likely to be effective when the PSA is below 0.4. After

2.0 it's rarely curative.

I'm not saying that you still have cancer for sure - though it

seems pretty likely given your latest PSA is well above 0.2. I'm

also not saying that you should have radiation. In the first

place, your cancer appears to be slow growing and might never

trouble you, and in the second place, salvage radiation is said

to have a little less than a 50/50 chance of working even when

done very early.

Just as with surgeons, it's important to find a good radiation

oncologist. That's not always easy to do. If you trust your

urologist, ask him for a recommendation. If you're near one of

the big teaching hospitals, they are often a good bet. There is

a list of NCI recommended centers at:

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

There are two in Ohio, one in Columbus and one in Cleveland, and

also some in Indiana and Pennsylvania. There are also some other

great places in Ohio like the Cleveland Clinic that aren't on the

NCI list.

If you visit one of the big centers, I recommend you try to

schedule appointments with both a medical oncologist with lots of

PCa experience, and a radiation oncologist with lots of PCa

experience. It would be wonderful if you could actually have

them both in the same room at the same time, but I assume that

won't be possible.

> Do they (the docs) have the ability to " take pictures " of

> what's " growning on " down there, or is it just " cause and

> effect " testing of various levels of juices running in my

> veins???

I don't know the answer to that. As Chuck said, all of the

imaging techniques only work when the amount of cancer reaches a

certain level, and yours may be below that level. However it is

possible that some imaging or, as Chuck suggested, some blood

tests, will help with a determination.

> Again, I apologize for not being more " cerebral " about my

> participation in the Group.

I don't see anything non-cerebral in your posting. Your

questions and your description of your situation both look highly

intelligent to me. You're doing just fine in that department.

> It's just that I " was " soooo depressed my first couple years

> after RP that I had to " drop out " of all the " doom and gloom "

> reading

It's easy to get depressed with this damned disease. However,

assuming that you still have cancer, here are some things that

might cheer you up.

1. It's still very small.

2. It's _very_ slow growing. You've gone from 0.19 to 0.32 in a

period of two years. At that rate of increase, your PSA would

take ten years to reach 10.0, which is still fairly low.

3. It might be treatable with radiation.

4. It is almost certainly treatable with drugs. You might not

even need " heavy " drugs. It may be that drugs like Dutasteride,

Casodex, or estradiol could do all you need. And if they're not

enough then the heavy duty ADT drugs like Lupron can be very

effective.

Chuck was diagnosed in 1992. Terry Herbert and Metcalfe

were both diagnosed in the mid-90s. All of them are still alive

and kicking in spite of still having cancer. Many others on this

list and in other forums that I've visited have lived 15 years or

longer, some of them with cancer that was more widespread and

more aggressive than yours. So even if you just get medical

(i.e. drug) treatment, I would give odds on your living on into

old age and dying of something other than prostate cancer, very

possibly without ever experiencing a single symptom from the

cancer.

You've got a lot of life ahead of you. I recommend that you seek

some expert medical advice, but also very strongly recommend that

you treat your condition as one of the unfortunate side effects

of living, but not the main business of life. Don't allow

yourself to stop living because you're afraid of dying. After

all, when we were children we all learned that we were going to

die. If we let that ruin our zest for life we'd be done before

we even got started.

Take a firm interest in life. Do the things you like to do. Be

with the people you like to be with. Do things that are

important to you. It's all still there for the taking. Don't

leave it on the table.

> - and, then periodically touch base with the " long timers " like

> Steve Jordan and Alan Meyers - to see if I'm still alive. LOL

>

> Thanks for your help,

I'm very glad if any of us are helping. Helping each other is

one of the things that, for me, makes living worth while.

Best of luck.

Alan

[Guest guest]

In reference to the question about taking a picture "down there" the best possibility is probably at Sandslake Radiology where they use iron oxide which is supposed to be more sensitive than other alternatives. It is not yet FDA approved so insurance might not cover it. I believe that Dr. s. Meyers has been sending his patients down for scans. They provided us with an excellent presentation at the IMPACT Conference. T Nowak, M.A., M.S.W.Director of Advocacy & Advanced Prostate Cancer ProgramsMalecarewww.malecare.comwww.advancedprostatecancer.net

anohiopicker wrote:

> Can anything else cause the rising PSA? Which you said a

> urinary infection could do.

Personally, I'm not optimistic about this being a bacterial

infection. As Chuck said, the doc would have had to have left a

significant amount of prostate tissue behind. I suppose it's

possible. However if he left tissue behind, it might very well

have cancer in it. I think it's more likely that there would be

cancer in the area outside the excised prostate, for example in

the seminal vesicles. Also, if it were prostatitis, I would

expect the PSA to stop rising but yours, although it has gone

down slightly at two of the readings, does have a general upward

trend.

It is also my understanding that when PSA goes above 0.2 after

surgery, most experts consider that a recurrence.

> And, what they do next? Which you also answered.

Speaking personally again, I think I'd want to visit a radiation

oncologist now, at least for a consultation, and not wait for the

PSA to reach 1.0. I saw a study once that said salvage radiation

is most likely to be effective when the PSA is below 0.4. After

2.0 it's rarely curative.

I'm not saying that you still have cancer for sure - though it

seems pretty likely given your latest PSA is well above 0.2. I'm

also not saying that you should have radiation. In the first

place, your cancer appears to be slow growing and might never

trouble you, and in the second place, salvage radiation is said

to have a little less than a 50/50 chance of working even when

done very early.

Just as with surgeons, it's important to find a good radiation

oncologist. That's not always easy to do. If you trust your

urologist, ask him for a recommendation. If you're near one of

the big teaching hospitals, they are often a good bet. There is

a list of NCI recommended centers at:

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

There are two in Ohio, one in Columbus and one in Cleveland, and

also some in Indiana and Pennsylvania. There are also some other

great places in Ohio like the Cleveland Clinic that aren't on the

NCI list.

If you visit one of the big centers, I recommend you try to

schedule appointments with both a medical oncologist with lots of

PCa experience, and a radiation oncologist with lots of PCa

experience. It would be wonderful if you could actually have

them both in the same room at the same time, but I assume that

won't be possible.

> Do they (the docs) have the ability to "take pictures" of

> what's "growning on" down there, or is it just "cause and

> effect" testing of various levels of juices running in my

> veins???

I don't know the answer to that. As Chuck said, all of the

imaging techniques only work when the amount of cancer reaches a

certain level, and yours may be below that level. However it is

possible that some imaging or, as Chuck suggested, some blood

tests, will help with a determination.

> Again, I apologize for not being more "cerebral" about my

> participation in the Group.

I don't see anything non-cerebral in your posting. Your

questions and your description of your situation both look highly

intelligent to me. You're doing just fine in that department.

> It's just that I "was" soooo depressed my first couple years

> after RP that I had to "drop out" of all the "doom and gloom"

> reading

It's easy to get depressed with this damned disease. However,

assuming that you still have cancer, here are some things that

might cheer you up.

1. It's still very small.

2. It's _very_ slow growing. You've gone from 0.19 to 0.32 in a

period of two years. At that rate of increase, your PSA would

take ten years to reach 10.0, which is still fairly low.

3. It might be treatable with radiation.

4. It is almost certainly treatable with drugs. You might not

even need "heavy" drugs. It may be that drugs like Dutasteride,

Casodex, or estradiol could do all you need. And if they're not

enough then the heavy duty ADT drugs like Lupron can be very

effective.

Chuck was diagnosed in 1992. Terry Herbert and Metcalfe

were both diagnosed in the mid-90s. All of them are still alive

and kicking in spite of still having cancer. Many others on this

list and in other forums that I've visited have lived 15 years or

longer, some of them with cancer that was more widespread and

more aggressive than yours. So even if you just get medical

(i.e. drug) treatment, I would give odds on your living on into

old age and dying of something other than prostate cancer, very

possibly without ever experiencing a single symptom from the

cancer.

You've got a lot of life ahead of you. I recommend that you seek

some expert medical advice, but also very strongly recommend that

you treat your condition as one of the unfortunate side effects

of living, but not the main business of life. Don't allow

yourself to stop living because you're afraid of dying. After

all, when we were children we all learned that we were going to

die. If we let that ruin our zest for life we'd be done before

we even got started.

Take a firm interest in life. Do the things you like to do. Be

with the people you like to be with. Do things that are

important to you. It's all still there for the taking. Don't

leave it on the table.

> - and, then periodically touch base with the "long timers" like

> Steve Jordan and Alan Meyers - to see if I'm still alive. LOL

>

> Thanks for your help,

I'm very glad if any of us are helping. Helping each other is

one of the things that, for me, makes living worth while.

Best of luck.

Alan

[Guest guest]

In reference to the question about taking a picture "down there" the best possibility is probably at Sandslake Radiology where they use iron oxide which is supposed to be more sensitive than other alternatives. It is not yet FDA approved so insurance might not cover it. I believe that Dr. s. Meyers has been sending his patients down for scans. They provided us with an excellent presentation at the IMPACT Conference. T Nowak, M.A., M.S.W.Director of Advocacy & Advanced Prostate Cancer ProgramsMalecarewww.malecare.comwww.advancedprostatecancer.net

anohiopicker wrote:

> Can anything else cause the rising PSA? Which you said a

> urinary infection could do.

Personally, I'm not optimistic about this being a bacterial

infection. As Chuck said, the doc would have had to have left a

significant amount of prostate tissue behind. I suppose it's

possible. However if he left tissue behind, it might very well

have cancer in it. I think it's more likely that there would be

cancer in the area outside the excised prostate, for example in

the seminal vesicles. Also, if it were prostatitis, I would

expect the PSA to stop rising but yours, although it has gone

down slightly at two of the readings, does have a general upward

trend.

It is also my understanding that when PSA goes above 0.2 after

surgery, most experts consider that a recurrence.

> And, what they do next? Which you also answered.

Speaking personally again, I think I'd want to visit a radiation

oncologist now, at least for a consultation, and not wait for the

PSA to reach 1.0. I saw a study once that said salvage radiation

is most likely to be effective when the PSA is below 0.4. After

2.0 it's rarely curative.

I'm not saying that you still have cancer for sure - though it

seems pretty likely given your latest PSA is well above 0.2. I'm

also not saying that you should have radiation. In the first

place, your cancer appears to be slow growing and might never

trouble you, and in the second place, salvage radiation is said

to have a little less than a 50/50 chance of working even when

done very early.

Just as with surgeons, it's important to find a good radiation

oncologist. That's not always easy to do. If you trust your

urologist, ask him for a recommendation. If you're near one of

the big teaching hospitals, they are often a good bet. There is

a list of NCI recommended centers at:

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

There are two in Ohio, one in Columbus and one in Cleveland, and

also some in Indiana and Pennsylvania. There are also some other

great places in Ohio like the Cleveland Clinic that aren't on the

NCI list.

If you visit one of the big centers, I recommend you try to

schedule appointments with both a medical oncologist with lots of

PCa experience, and a radiation oncologist with lots of PCa

experience. It would be wonderful if you could actually have

them both in the same room at the same time, but I assume that

won't be possible.

> Do they (the docs) have the ability to "take pictures" of

> what's "growning on" down there, or is it just "cause and

> effect" testing of various levels of juices running in my

> veins???

I don't know the answer to that. As Chuck said, all of the

imaging techniques only work when the amount of cancer reaches a

certain level, and yours may be below that level. However it is

possible that some imaging or, as Chuck suggested, some blood

tests, will help with a determination.

> Again, I apologize for not being more "cerebral" about my

> participation in the Group.

I don't see anything non-cerebral in your posting. Your

questions and your description of your situation both look highly

intelligent to me. You're doing just fine in that department.

> It's just that I "was" soooo depressed my first couple years

> after RP that I had to "drop out" of all the "doom and gloom"

> reading

It's easy to get depressed with this damned disease. However,

assuming that you still have cancer, here are some things that

might cheer you up.

1. It's still very small.

2. It's _very_ slow growing. You've gone from 0.19 to 0.32 in a

period of two years. At that rate of increase, your PSA would

take ten years to reach 10.0, which is still fairly low.

3. It might be treatable with radiation.

4. It is almost certainly treatable with drugs. You might not

even need "heavy" drugs. It may be that drugs like Dutasteride,

Casodex, or estradiol could do all you need. And if they're not

enough then the heavy duty ADT drugs like Lupron can be very

effective.

Chuck was diagnosed in 1992. Terry Herbert and Metcalfe

were both diagnosed in the mid-90s. All of them are still alive

and kicking in spite of still having cancer. Many others on this

list and in other forums that I've visited have lived 15 years or

longer, some of them with cancer that was more widespread and

more aggressive than yours. So even if you just get medical

(i.e. drug) treatment, I would give odds on your living on into

old age and dying of something other than prostate cancer, very

possibly without ever experiencing a single symptom from the

cancer.

You've got a lot of life ahead of you. I recommend that you seek

some expert medical advice, but also very strongly recommend that

you treat your condition as one of the unfortunate side effects

of living, but not the main business of life. Don't allow

yourself to stop living because you're afraid of dying. After

all, when we were children we all learned that we were going to

die. If we let that ruin our zest for life we'd be done before

we even got started.

Take a firm interest in life. Do the things you like to do. Be

with the people you like to be with. Do things that are

important to you. It's all still there for the taking. Don't

leave it on the table.

> - and, then periodically touch base with the "long timers" like

> Steve Jordan and Alan Meyers - to see if I'm still alive. LOL

>

> Thanks for your help,

I'm very glad if any of us are helping. Helping each other is

one of the things that, for me, makes living worth while.

Best of luck.

Alan

[Guest guest]

Some more on this topic:

Statistics

----------

As explained, doctors self-reported claims about their

results are highly unreliable. Even apart from all the issues of

self-interest, which are considerable, there are also problems

with self-delusion, inability to follow-up, and difficulty

compiling the statistics.

Self-delusion comes in when the doctor convinces himself that he

hardly ever makes mistakes. His statistics have to be good - at

least in his own mind.

Inability to follow-up comes in because patients change doctors

all the time and it would not be surprising if patients who fail

treatment are even more likely to change doctors. The original

doc just doesn't know what happened to a lot of his patients.

Difficulties in compiling the statistics are formidable. What is

the definition of success? What is failure? How many years out

do we look? What do we do with people that stopped coming in?

What if the patient was treated by multiple doctors? How often

do we update the records and recompute results? What statistics

should be kept? Practicing doctors aren't experienced at this

sort of thing and don't want to spend the large amounts of time

it requires to become competent at them.

However there are " nomograms " compiled by various researchers,

and by the " Surveillance, Epidemiology and End Results " ( " SEER " )

project at the National Cancer Institute. Unfortunately, a lot

of these are highly technical and hard for laymen to understand.

There is an easy to use online nomogram program at the Memorial

Sloan-Kettering hospital. I used to refer to it a lot but when I

checked it just now I got unbelievable and un-understandable

results. Maybe I did something wrong.

Depression

----------

Sometimes a good alternative to drugs is counseling. Good

counselors who understand cancer, aging, and the sexual effects

of treatment are hard to find, but if you can find one they can

be worth their weight in gold - helping you to work through and

deal with the issues.

Most hospitals have social workers who have worked with these

issues. Some are very good. They may or may not be available to

you. If not, they may be able to recommend counselors in the

community whom they know to be good. There may even be free or

low cost counseling available through a community mental health

program.

Psychologists and social worker counselors are often better

counselors than psychiatrists. These days, most psychiatrists

specialize in prescribing drugs, not talking to patients.

Alan