Re: My Predicament

[Guest guest]

Hi Dennis, Congratulations

on 86 years of excellent health. It appears they don't want to treat you based on your age. You can not be denied treatment based on your age, it is illegal. You may need the help of a lawyer.

Five

years ago, my mother was in a nursing home dying of advanced Alzheimer's. She was 89 years old. She suffered a stroke and was taken to the local hospital. I was her health care proxy. The doctors in the ER refused to listen and started advanced treatment to save her life. I called my lawyer. He came to the hospital, opened his cell phone and told the ER doctor he was calling 911 to report the felony battery on my

mother. I have never seen anyone's attitude change 180 degrees so fast.

Good luck and don't accept their discrimination.

Charlie D. To: prostatecancersupport Sent: Tuesday, June 26, 2012 4:39 AM Subject: My Predicament

As there is such a breadth and depth of knowledge regarding prostate cancer on this website, I would like to take the liberty of describing my predicament so that fellow sufferers can help me in arriving at a decision. I am 86 years old and in excellent health apart from the fact that I was diagnosed in August last year with T3 prostate cancer. I had a biopsy in which two cores were taken, each of which was 80% cancerous and my initial PSA reading was 94.6 which then rose within four months to 148 giving me a PSA doubling time of approximately 7 months. Since then I have been on Lupron/Prostap for five months which has brought my PSA reading down to 2.8. The Gleason score I was given is 7 (4 + 3).

I have just finished reading Walsh's book on surviving prostate cancer and the message I get from it is that I face an inevitable death from prostate cancer within about 5/6 years given the fact that I have been offered neither radical prostatectomy nor radiation. I am interested in having HIFU in Munich to delay the inevitable, since in the paper written by Chaussy and Thueroff entitled "Robotic High-intensity Focused Ultrasound for Prostate Cancer: What Have We Learned in 15 Years of Clinical Use?", which is on the net, they detail the results of treatment of 168 patients in my situation.

As the side-effects of HIFU would seem to compare favourably with radical prostatectomy and radiation and the chance of fistula would appear to be only about one in 200, I am seriously considering having this treatment there, and I would welcome your comments.Dennis Goffin

[Guest guest]

Dennis Goffin wrote:

> As there is such a breadth and depth of knowledge regarding

> prostate cancer on this website, I would like to take the

> liberty of describing my predicament so that fellow sufferers

> can help me in arriving at a decision.  I am 86 years old and

> in excellent health apart from the fact that I was diagnosed in

> August last year with T3 prostate cancer.

> I had a biopsy in which two cores were taken, each of which was

> 80% cancerous and my initial PSA reading was 94.6 which then

> rose within four months to 148 giving me a PSA doubling time of

> approximately 7 months. Since then I have been on

> Lupron/Prostap for five months which has brought my PSA reading

> down to 2.8. The Gleason score I was given is 7 (4 + 3).

> I have just finished reading Walsh's book on surviving prostate

> cancer and the message I get from it is that I face an

> inevitable death from prostate cancer within about 5/6 years

> given the fact that I have been offered neither radical

> prostatectomy nor radiation.

> I am interested in having HIFU in Munich to delay the

> inevitable, since in the paper written by Chaussy and Thueroff

> entitled " Robotic High-intensity Focused Ultrasound for

> Prostate Cancer: What Have We Learned in 15 Years of Clinical

> Use? " , which is on the net, they detail the results of

> treatment of 168 patients in my situation.

> As the side-effects of HIFU would seem to compare favourably

> with radical prostatectomy and radiation and the chance of

> fistula would appear to be only about one in 200, I am

> seriously considering having this treatment there, and I would

> welcome your comments.

Dennis,

I looked at the full text of that paper.  I only skimmed it, but

I saw nothing there that really talked about metastatic cancer.

There was a single sentence at the end that said:

    " As additional local one-session tumor debulking therapy

    option with low perioperative morbidity, it is feasible for

    patients in any age and health status. "

That was it.  The rest of the paper talked only about men with

local, non-metastatic disease.

With a PSA of 148 I think it is extremely unlikely that you have

no metastatic disease.  I would guess that most of your cancer is

outside the prostate.  Whether " debulking " that part that's in

the prostate would do you any good seems very questionable to me.

I think you're probably going to require systemic treatment - as

you have had with the Lupron.  If you are lucky, that will

continue to work for you for a long time.  If not, you may still

be able to hold the cancer down with abiraterone (Zytiga) or one

of the other new drugs, or to benefit from chemotherapy - though

that can be a very harsh treatment.

I question whether HIFU would do you any good at all and might

just do more harm than good.  Before trying it, I think that, at

the very least, you should get a second opinion from someone you

trust.

There is a list of top ranked cancer centers in the U.S. at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

If you don't already have a specialist that you trust, you might

try calling one of those.

Best of luck.

    Alan

[Guest guest]

Dennis,

You have had some excellent advice

already, but there are a couple of points that I thought I might add, from my

perspective, which is not one that everyone agrees with all the time.

Some short time after I was diagnosed back

in 1996 a man who called himself Lorenzo Q Squarf posted a good deal on sites

like this. I think the correct description of his style might be iconoclastic –

he certainly had very strong views that clashed with the perceived wisdom

of the times. Much of what he had to say back then has proved to be sound as

time has gone by. I collected a bit of his published wisdom on my site at http://www.yananow.org/Squarf.htm and

you might find it amusing to read his views, especially when it comes to his

advice to men diagnosed in their 80s:

“If you are in

your 80s don't play the therapy game. Period. No. Don't do it. It will destroy

the rest of your life. Ameliorate negative symptoms with medication. You can

probably do this in an agreeable manner for a longer time than you might

imagine. Smile. You have won.”

I haven’t read Walsh’s book

for many years so can’t remember where he made the statement that leads

you to conclude <snip> …. I get from it is that I face an inevitable death from

prostate cancer within about 5/6 years <snip>

Such a prognosis seems, from what I have learned over the past sixteen years

likely to be as accurate as the 3/5 years given to me back in 1996.

Your high PSA is a matter for some

concern, without doubt, but there have been men with higher PSA levels and

higher staging and higher Gleason Scores who have lived for longer than 5/6

years. I don’t know if you have fossicked around my YANA – You Are

Not Alone Now at http://www.yananow.org site and read the stories

searchable at http://www.yananow.org/query_stories.php

At present there is no one in their 80s listed (I’d be very happy to have

you as the first in that age group) but there are many 70 year olds and 50 or

60 men diagnosed with a PSA over 100. Perhaps these stories will help you to

focus on what you can best do to managed your disease and beat that perception

of a 5/6 time frame.

If you are still considering the German

HIFU option, using the Site Search Engine at the top of the Survivors Story

page to which I have directed you will throw up a number of links to the

stories of men who chose that route out of the 20 or so men who have related

their HIFU experiences

Good luck and if you want to contribute

your experience to the site just go along here http://www.yananow.org/JoinUsForm.php

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 Dennis Goffin

Sent: Tuesday, 26 June 2012 6:40

PM

To: prostatecancersupport

Subject:

My Predicament

As there is such a breadth and depth of knowledge regarding prostate cancer on

this website, I would like to take the liberty of describing my predicament so

that fellow sufferers can help me in arriving at a decision. I am 86 years old

and in excellent health apart from the fact that I was diagnosed in August last

year with T3 prostate cancer.

I had a biopsy in which two cores were taken, each of which was 80% cancerous

and my initial PSA reading was 94.6 which then rose within four months to 148

giving me a PSA doubling time of approximately 7 months. Since then I have been

on Lupron/Prostap for five months which has brought my PSA reading down to 2.8.

The Gleason score I was given is 7 (4 + 3).

I have just finished reading Walsh's book on surviving prostate cancer and the

message I get from it is that I face an inevitable death from prostate cancer

within about 5/6 years given the fact that I have been offered neither radical

prostatectomy nor radiation.

I am interested in having HIFU in Munich

to delay the inevitable, since in the paper written by Chaussy and Thueroff

entitled " Robotic High-intensity Focused Ultrasound for Prostate Cancer:

What Have We Learned in 15 Years of Clinical Use? " , which is on the net,

they detail the results of treatment of 168 patients in my situation.

As the side-effects of HIFU would seem to compare favourably with radical

prostatectomy and radiation and the ch ance of fistula would appear to be only

about one in 200, I am seriously considering having this treatment there, and I

would welcome your comments.

Dennis Goffin

[Guest guest]

Chuck Maack wrote:

> ... and so far no identifiable metastasis despite the rising

> but low PSA (1.17ng/ml) while on Lupron, Avodart, and Zytiga.

> Just had a CT and bone scan and the bone scan indicated an

> undistinguishable spot on my spine, but I think that was there

> in previous imaging and not considered metastasis. But to make

> sure, going to have an MRI in a couple weeks to check it out.

Chuck,

If you haven't seen it yet, I recommend looking at the video, the

link for which was posted by Don M. a few days ago.

http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kw\

on-mayo-clinic/

You migth be a good candidate for the PET scans they do at

Rochester. If you're lucky, you could have just one or two focal

metastases that can be treated with curative intent.

If you're not so lucky, the scan will at least tell you that too

and you can concentrate on getting Zytiga, or whatever.

Incidentally, it appears that many men who think they are hormone

refractory are not - as the effectiveness of Zytiga demonstrates.

    Alan

[Guest guest]

Charlie De wrote:

> Why does androgen deprivation therapy lower PSA levels? Does it

> kill the cancer cells or shrink them?

This is a terrific question! I have occasionally searched for

the answer, but never found a definitive one. Some answers that

I have seen are:

  1. Yes, it kills cancer cells, but not all of them.

  2. No, it doesn't kill them, but it puts them into a sort of

     sleep, i.e, they stop replicating, stop putting out much

     PSA, and shrink in size.

  3. A combination of 1 and 2.

If someone has a definitive answer, please let us know and, if at

all possible, give us a citation. All of the answers I've seen

are simple statements without telling us what the evidence is.

    Alan

[Guest guest]

Dennis,

The is a a doctor ( Myers or Meyers) in Earlysville, Virginia who

specializes in cases`like yours.

He says he rarely loses a patient.

Uses mostly drugs, diet, spot radiation treatment for metastases.

You could call him.

Doug

[Guest guest]

FWIW (from a non-expert) --

I think Alan's comment is on the right track.

Since your PSA fell so much when you were given Lupron, your PCa isn't yet

" castrate-resistant " .

It's likely that your cancer will _eventually_ develop a resistance to whatever

hormone-blocking drug it sees, or learn to live without testosterone. But _how

long_ it takes to develop that resistance is unpredictable. We have men in my

local group who have been dealing with metastatic PCa for much longer than 5-6

years.

The doctors who didn't offer you radiation or prostatectomy probably used the

same logic that Alan did:

.. . . You've almost certainly got metastatic PCa;

.. . . Removing the prostate (or killing its cells with radiation)

.. . . won't have any effect on the mestastasized tumours.

Once the demon is out of the bottle, it's out of the bottle. You could settle

the question for sure with a bone scan.

The _good_ news is that there are a fair number of new drugs being developed for

" castrate-resistant " PCa. So survival times in the future are going to be a lot

longer than those in the past.

I don't think your situation is quite as grim as you make it out to be.

>

>

>

>

> As there is such a breadth and depth of knowledge

regarding prostate cancer on this website, I would like to take the liberty of

describing my predicament so that fellow sufferers can help me in arriving at a

decision. I am 86 years old and in excellent health apart from the fact that I

was diagnosed in August last year with T3 prostate cancer. I

had a biopsy in which two cores were taken, each of which was 80% cancerous and

my initial PSA reading was 94.6 which then rose within four months to 148 giving

me a PSA doubling time of approximately 7 months. Since then I have been on

Lupron/Prostap for five months which has brought my PSA reading down to 2.8. The

Gleason score I was given is 7 (4 + 3). I have just

finished reading Walsh's book on surviving prostate cancer and the message I get

from it is that I face an inevitable death from prostate cancer within about 5/6

years given the fact that I have been offered neither radical prostatectomy nor

radiation. I am interested in having HIFU in Munich to

delay the inevitable, since in the paper written by Chaussy and Thueroff

entitled " Robotic High-intensity Focused Ultrasound for Prostate Cancer: What

Have We Learned in 15 Years of Clinical Use? " , which is on the net, they detail

the results of treatment of 168 patients in my situation. As

the side-effects of HIFU would seem to compare favourably with radical

prostatectomy and radiation and the chance of fistula would appear to be only

about one in 200, I am seriously considering having this treatment there, and I

would welcome your comments.Dennis Goffin

>

[Guest guest]

Alan, I'm sorry but you didn't skim very well. There is a section of the paper devoted to the treatment of T3 cancer, which deserves closer scrutiny.Regards,DennisTo: ProstateCancerSupport From: ameyer2@...Date: Tue, 26 Jun 2012 08:45:51 -0700Subject: Re: My Predicament

Dennis Goffin wrote:

> As there is such a breadth and depth of knowledge regarding

> prostate cancer on this website, I would like to take the

> liberty of describing my predicament so that fellow sufferers

> can help me in arriving at a decision. I am 86 years old and

> in excellent health apart from the fact that I was diagnosed in

> August last year with T3 prostate cancer.

> I had a biopsy in which two cores were taken, each of which was

> 80% cancerous and my initial PSA reading was 94.6 which then

> rose within four months to 148 giving me a PSA doubling time of

> approximately 7 months. Since then I have been on

> Lupron/Prostap for five months which has brought my PSA reading

> down to 2.8. The Gleason score I was given is 7 (4 + 3).

> I have just finished reading Walsh's book on surviving prostate

> cancer and the message I get from it is that I face an

> inevitable death from prostate cancer within about 5/6 years

> given the fact that I have been offered neither radical

> prostatectomy nor radiation.

> I am interested in having HIFU in Munich to delay the

> inevitable, since in the paper written by Chaussy and Thueroff

> entitled "Robotic High-intensity Focused Ultrasound for

> Prostate Cancer: What Have We Learned in 15 Years of Clinical

> Use?", which is on the net, they detail the results of

> treatment of 168 patients in my situation.

> As the side-effects of HIFU would seem to compare favourably

> with radical prostatectomy and radiation and the chance of

> fistula would appear to be only about one in 200, I am

> seriously considering having this treatment there, and I would

> welcome your comments.

Dennis,

I looked at the full text of that paper. I only skimmed it, but

I saw nothing there that really talked about metastatic cancer.

There was a single sentence at the end that said:

"As additional local one-session tumor debulking therapy

option with low perioperative morbidity, it is feasible for

patients in any age and health status."

That was it. The rest of the paper talked only about men with

local, non-metastatic disease.

With a PSA of 148 I think it is extremely unlikely that you have

no metastatic disease. I would guess that most of your cancer is

outside the prostate. Whether "debulking" that part that's in

the prostate would do you any good seems very questionable to me.

I think you're probably going to require systemic treatment - as

you have had with the Lupron. If you are lucky, that will

continue to work for you for a long time. If not, you may still

be able to hold the cancer down with abiraterone (Zytiga) or one

of the other new drugs, or to benefit from chemotherapy - though

that can be a very harsh treatment.

I question whether HIFU would do you any good at all and might

just do more harm than good. Before trying it, I think that, at

the very least, you should get a second opinion from someone you

trust.

There is a list of top ranked cancer centers in the U.S. at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

If you don't already have a specialist that you trust, you might

try calling one of those.

Best of luck.

Alan

[Guest guest]

Dennis,Can you point me to a page number?I see on page 184 of the journal, page 5 of the PDF, a section entitled: "High-intensity Focused Ultrasound in Locally Advanced (T3-T4) or Non-metastatic Hormone-resistant Prostate Cancer."As far as I can tell, that's the only discussion of T3 or T4 cancer, with a brief back reference to it in the conclusion.By "locally advanced" I take it to mean the disease has progressed beyond the prostate itself but remains in the vicinity of the prostate. By "non-metastatic" I take it they mean confined to the

prostate itself or its immediate environs.A man who, for example, has already failed surgery or radiation, and whose disease continues to progress in the prostate region but has not yet spread to other parts of the body would be "locally advanced". The disease remains entirely in the prostate bed and/or surrounding lymph nodes and seminal vesicles.With a PSA that reached 148 I'd be surprised if your disease is locally advanced but not metastatic. I suppose it could be. A bone scan or C11 Choline PET scan might tell you, though neither scan might show anything if you are on hormone therapy. Has your cancer been diagnosed as "locally advanced", or as "metastatic"? What does your oncologist say?As I understand it, the standard of care for locally advanced disease is

external beam radiation. Unlike HIFU, it can be directed at the region all around the prostate as well as the prostate itself. It is possible that men who get HIFU in such a situation will live longer than men who don't, but I would be surprised if they live longer than, or as long as, men who receive radiation.The standard of care for metastatic disease is hormone therapy. The fact that you were put on HT probably indicates that your doctor believes that the cancer is metastatic. If it is, I don't understand how HIFU could be of much help.The article's discussion of of T3 cancer is pretty slender. It says that in a study of 55 men whose disease was progressing on HT, with a mean follow-up of 21 months, 87.3% were still alive. Is that better than with no HIFU at all? Curiously, the article doesn't say. From the anecdotal evidence of men who post on

this and other groups that I follow, I suspect that it is not out of line with survival rates for men who get no other treatment after their PSA begins to rise on HT. Even after a man becomes hormone refractory, it takes time for the cancer to kill him. Even if the PSA doubles every 4 months (it was 7 in your case), a PSA of 2 would progress to 2 * 2 * 2 * 2 = 16 at the end of one year, and 16 * 2 * 2 * 2 = 128 at the end of two years.Don't take my word for any of this Dennis. I'm not an expert. See a specialist and ask him. But if I were you I'd be very wary of flying off to Germany and getting HIFU. I imagine you could find someone there who would be happy to take your money and treat you, just as you can find people here who will do it with any FDA approved treatment that you like. But I'm having trouble figuring out how it can do you any real good.Best of

luck. Alan --Alan Meyerameyer2@... To: prostatecancersupport Sent: Friday, June 29, 2012 4:01 AM Subject: RE: My Predicament

Alan, I'm sorry but you didn't skim very well. There is a section of the paper devoted to the treatment of T3 cancer, which deserves closer scrutiny.Regards,DennisTo: ProstateCancerSupport From: ameyer2@...Date: Tue, 26 Jun 2012 08:45:51 -0700Subject: Re: My Predicament

Dennis Goffin wrote:

> As there is such a breadth and depth of knowledge regarding

> prostate cancer on this website, I would like to take the

> liberty of describing my predicament so that fellow sufferers

> can help me in arriving at a decision. I am 86 years old and

> in excellent health apart from the fact that I was diagnosed in

> August last year with T3 prostate cancer.

> I had a biopsy in which two cores were taken, each of which was

> 80% cancerous and my initial PSA reading was 94.6 which then

> rose within four months to 148 giving me a PSA doubling time of

> approximately 7 months. Since then I have been on

> Lupron/Prostap for five months which has brought my PSA reading

> down to 2.8. The Gleason score I was given is 7 (4 + 3).

> I have just finished reading Walsh's book on surviving prostate

> cancer and the message I get from it is that I face an

> inevitable death from prostate cancer within about 5/6 years

> given the fact that I have been offered neither radical

> prostatectomy nor radiation.

> I am interested in having HIFU in Munich to delay the

> inevitable, since in the paper written by Chaussy and Thueroff

> entitled "Robotic High-intensity Focused Ultrasound for

> Prostate Cancer: What Have We Learned in 15 Years of Clinical

> Use?", which is on the net, they detail the results of

> treatment of 168 patients in my situation.

> As the side-effects of HIFU would seem to compare favourably

> with radical prostatectomy and radiation and the chance of

> fistula would appear to be only about one in 200, I am

> seriously considering having this treatment there, and I would

> welcome your comments.

Dennis,

I looked at the full text of that paper. I only skimmed it, but

I saw nothing there that really talked about metastatic cancer.

There was a single sentence at the end that said:

"As additional local one-session tumor debulking therapy

option with low perioperative morbidity, it is feasible for

patients in any age and health status."

That was it. The rest of the paper talked only about men with

local, non-metastatic disease.

With a PSA of 148 I think it is extremely unlikely that you have

no metastatic disease. I would guess that most of your cancer is

outside the prostate. Whether "debulking" that part that's in

the prostate would do you any good seems very questionable to me.

I think you're probably going to require systemic treatment - as

you have had with the Lupron. If you are lucky, that will

continue to work for you for a long time. If not, you may still

be able to hold the cancer down with abiraterone (Zytiga) or one

of the other new drugs, or to benefit from chemotherapy - though

that can be a very harsh treatment.

I question whether HIFU would do you any good at all and might

just do more harm than good. Before trying it, I think that, at

the very least, you should get a second opinion from someone you

trust.

There is a list of top ranked cancer centers in the U.S. at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

If you don't already have a specialist that you trust, you might

try calling one of those.

Best of luck.

Alan