For the New Folks

[Guest guest]

Welcome to the club no one wants to join.

I think I might have some suggestions for you that will help you 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.

There is a lot to do, but considering the numbers, apparently time to

do it.

(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:

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

Grignon (Michigan) [313] 745-2520

Jon Oppenheimer (Tennessee) [888] 868-7522

UroCor, Inc. [800] 411-1839

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

insurance/Medicare. The cost, last I heard, was about $350. More if

further tests 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, not 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://prostate-cancer.org/index.html

is an excellent beginning.

Some medics who specialize in treatment (tx) of PCa are listed via

this portal: http://prostate-cancer.org/resource/find-a-physician.html

(3) I heartily recommend this 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]

This is a good post from Steve for newly

diagnosed people. He and I do however disagree on one or two points. Specifically:

He

says <snip> Anecdotes contributed by other patients can be

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

own decisions. <snip> Of course I agree in principle that another

man’s decision should not be the only criterion in the decision

making process, but I believe that contributions made on this List –

and on other sites – by men who may not have any medical

qualifications but who have had personal experience or who have been

around the disease for a long time can be something more than “interesting

anecdotes”. They can take away some of the fear and feeling of

isolation that so many, if not all, people feel on hearing the word Cancer

and they can help guide the newly diagnosed, or the man battling side

effects of treatment towards relevant information and potential solutions

to their problems.

He

also says <snip> Personal contact with other patients can be very

helpful. <snip> and mentions Us-Too, one of many support groups in

the USA.

Again no one can argue about the importance of personal contact, but this

does not have to be confined to face to face meetings in the support

groups. ‘Meeting’ people on the Internet can be as helpful –

perhaps more helpful because of the anonymity that people can have when

discussing issues that they might be too embarrassed to raise in earthly

meetings.

Of course I must declare an “interest’

here because I run two PCa focused websites, the main one being YANA – You Are Not Alone Now at

http://www.yananow.net . Neither of these sites is commercial and although

donations are always welcome, no charge is made. The aim of the Yana site is very clearly stated on its welcome page:

We want to provide comfort to any man diagnosed with

prostate cancer, to offer thoughtful support to him and his family and to help

them to decide how best to deal with the diagnosis by providing them with and

guiding them to suitable information, being mindful at all times that it is the

individual's ultimate choice that the path he decides to follow is his own and

that of his family, based on his particular circumstances.

Although the site may indeed be regarded

(or disregarded) as being an amateur effort and therefore not comparable to

those set up with the financial resources of large organizations – I am a

one man band – many people have mailed me over the years to say that they

have found the site helpful in achieving these aims. There are almost 500

stories of men who have trodden the PCa path and although these stories may be

regarded as merely interesting anecdotes, they seem to be more than that to

many people who no doubt are sensible enough to take heed of the words on this

section of the site:

The accounts on the site are based on information received

from our contributors and they may not be completely accurate. We hope they may

provide you with an insight into how others have dealt with the issues that you

now face. The stories and charts provided are for your information only, and

show a brief summary of what others have done. They should not be used for

making your own treatment decision. Please be aware that there is much more to

the decision making process, as you will see if you go to Treatment Choices.

All the best

Terry Herbert

I have no medical

qualifications but I was diagnosed in ‘96: and have learned a bit since

then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of

the decisions we make with regard to prostate cancer are made with inadequate

data "

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Steve Jordan

Sent: Friday, 25 July 2008 5:55 AM

To: ProstateCancerSupport

Subject:

For the New Folks

Welcome to the club no one wants to join.

I think I might have some suggestions for you that will help you 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.

There is a lot to do, but considering the numbers, apparently time to

do it.

(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:

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

Grignon (Michigan)

[313] 745-2520

Jon Oppenheimer (Tennessee)

[888] 868-7522

UroCor, Inc. [800] 411-1839

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

insurance/Medicare. The cost, last I heard, was about $350. More if

further tests 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, not 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://prostate-cancer.org/index.html

is an excellent beginning.

Some medics who specialize in treatment (tx) of PCa are listed via

this portal: http://prostate-cancer.org/resource/find-a-physician.html

(3) I heartily recommend this 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]

This is a good post from Steve for newly

diagnosed people. He and I do however disagree on one or two points. Specifically:

He

says <snip> Anecdotes contributed by other patients can be

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

own decisions. <snip> Of course I agree in principle that another

man’s decision should not be the only criterion in the decision

making process, but I believe that contributions made on this List –

and on other sites – by men who may not have any medical

qualifications but who have had personal experience or who have been

around the disease for a long time can be something more than “interesting

anecdotes”. They can take away some of the fear and feeling of

isolation that so many, if not all, people feel on hearing the word Cancer

and they can help guide the newly diagnosed, or the man battling side

effects of treatment towards relevant information and potential solutions

to their problems.

He

also says <snip> Personal contact with other patients can be very

helpful. <snip> and mentions Us-Too, one of many support groups in

the USA.

Again no one can argue about the importance of personal contact, but this

does not have to be confined to face to face meetings in the support

groups. ‘Meeting’ people on the Internet can be as helpful –

perhaps more helpful because of the anonymity that people can have when

discussing issues that they might be too embarrassed to raise in earthly

meetings.

Of course I must declare an “interest’

here because I run two PCa focused websites, the main one being YANA – You Are Not Alone Now at

http://www.yananow.net . Neither of these sites is commercial and although

donations are always welcome, no charge is made. The aim of the Yana site is very clearly stated on its welcome page:

We want to provide comfort to any man diagnosed with

prostate cancer, to offer thoughtful support to him and his family and to help

them to decide how best to deal with the diagnosis by providing them with and

guiding them to suitable information, being mindful at all times that it is the

individual's ultimate choice that the path he decides to follow is his own and

that of his family, based on his particular circumstances.

Although the site may indeed be regarded

(or disregarded) as being an amateur effort and therefore not comparable to

those set up with the financial resources of large organizations – I am a

one man band – many people have mailed me over the years to say that they

have found the site helpful in achieving these aims. There are almost 500

stories of men who have trodden the PCa path and although these stories may be

regarded as merely interesting anecdotes, they seem to be more than that to

many people who no doubt are sensible enough to take heed of the words on this

section of the site:

The accounts on the site are based on information received

from our contributors and they may not be completely accurate. We hope they may

provide you with an insight into how others have dealt with the issues that you

now face. The stories and charts provided are for your information only, and

show a brief summary of what others have done. They should not be used for

making your own treatment decision. Please be aware that there is much more to

the decision making process, as you will see if you go to Treatment Choices.

All the best

Terry Herbert

I have no medical

qualifications but I was diagnosed in ‘96: and have learned a bit since

then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of

the decisions we make with regard to prostate cancer are made with inadequate

data "

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Steve Jordan

Sent: Friday, 25 July 2008 5:55 AM

To: ProstateCancerSupport

Subject:

For the New Folks

Welcome to the club no one wants to join.

I think I might have some suggestions for you that will help you 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.

There is a lot to do, but considering the numbers, apparently time to

do it.

(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:

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

Grignon (Michigan)

[313] 745-2520

Jon Oppenheimer (Tennessee)

[888] 868-7522

UroCor, Inc. [800] 411-1839

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

insurance/Medicare. The cost, last I heard, was about $350. More if

further tests 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, not 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://prostate-cancer.org/index.html

is an excellent beginning.

Some medics who specialize in treatment (tx) of PCa are listed via

this portal: http://prostate-cancer.org/resource/find-a-physician.html

(3) I heartily recommend this 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]

Hi Cliff,

Gregg and I were pretty naive back when he was diagnosed, but we knew

enough to ask for a second opinion on his biopsy. Kaiser would not pay

for an outside opinion, but agreed to let a second pathologist within

their system look at Gregg's slides. The second opinion matched the

first, which was at least something.

It is good to get a second opinion. You do not need to have another

biopsy. The biopsy specimens are yours legally, and if you want them

sent to another facility it is your right to have it done. In my

opinion you need to get yourself another urologist pronto. This person

sounds like exactly the kind of arrogant SOB you don't want handling

your case. I can only imagine how he is going to act if you tell him

you want a treatment other than what he recommends, which is most

likely going to be surgery.

Second opinions in the medical field have become the norm and are

really the smart thing to do.

Just my two cents.

Laurel

>

> Thanks for the information.

>

> I asked the urologist that I was referred to about having the biopsy

re-

> tested at the lab(s) you listed and he seemed annoyed and said 1. His

> hospital's lab has results equal to the national average. 2. Bostwick

> and those other labs do not specialize in PCa, they do other types of

> analysis too. Is that true? Can the same specimines be retested, or

is

> a new biopsy required?

>

[Guest guest]

Hi Cliff,

Gregg and I were pretty naive back when he was diagnosed, but we knew

enough to ask for a second opinion on his biopsy. Kaiser would not pay

for an outside opinion, but agreed to let a second pathologist within

their system look at Gregg's slides. The second opinion matched the

first, which was at least something.

It is good to get a second opinion. You do not need to have another

biopsy. The biopsy specimens are yours legally, and if you want them

sent to another facility it is your right to have it done. In my

opinion you need to get yourself another urologist pronto. This person

sounds like exactly the kind of arrogant SOB you don't want handling

your case. I can only imagine how he is going to act if you tell him

you want a treatment other than what he recommends, which is most

likely going to be surgery.

Second opinions in the medical field have become the norm and are

really the smart thing to do.

Just my two cents.

Laurel

>

> Thanks for the information.

>

> I asked the urologist that I was referred to about having the biopsy

re-

> tested at the lab(s) you listed and he seemed annoyed and said 1. His

> hospital's lab has results equal to the national average. 2. Bostwick

> and those other labs do not specialize in PCa, they do other types of

> analysis too. Is that true? Can the same specimines be retested, or

is

> a new biopsy required?

>

[Guest guest]

>

> Anyone newly diagnosed should consider watchful waiting. To learn

more, visit my web site, www.watchwait.com. it has lots of studies,

stories from the media, my own story, and more. Lasalandra.

>

My husband was v ery recently diagnosed, after kindey failure, due to

prostate blockage, which turned out to be cancer. Had a bone scan,

which was negative. We don't have health insurance,and don't know what

to do next. We have an app't on this Fri., with the urologist. Mrs. T.

[Guest guest]

Well, now that I've decided to get a second opinion on my biopsy which

of the labs is " best " , or are they all about the same? I saw one at

Stanford listed in Dr. Walsh's Guide to Surviving Prostate

Cancer, has anyone used/recommended that lab? Also, does the lab

request the slides for me, or do I ask the urologist or the original

lab to send them?

[Guest guest]

thielaharriet wrote:

> My husband was v ery recently diagnosed, after kindey

> failure, due to prostate blockage, which turned out to be

> cancer. Had a bone scan, which was negative. We don't have

> health insurance,and don't know what to do next. We have an

> app't on this Fri., with the urologist. Mrs. T.

I am sorry to hear of your husband's health issues and now the

financial issues which you are facing.

Treatment for prostate cancer is expensive. I found an article

on the web that compares costs here:

http://jco.ascopubs.org/cgi/content/full/20/12/2869.

They cite costs of $13,765 and up. However I don't know what

they are including in the costs because I have seen charges that

are much, much higher (one fellow saw a bill for $70,000).

It's also the case that patients without insurance get charged

much more than patients with insurance. Or to put it

differently, the insured and uninsured patients may get the same

charges, but the insurance companies get away with paying a

fraction of the bill whereas the uninsured don't have the same

leverage with which to fight the charges.

One possibility for treatment is to go to your local state social

service agency and see if they have any programs that can help.

They may or they may not. Some states have agencies that will

pay something, but some of them pay so little that no reputable

doctors or hospitals will accept patients. For example here in

land there is a Medicaid program for people without money,

but the great majority of doctors will not accept Medicaid

patients because the payments are always small, late, and

burdened with paperwork.

Another possibility is to look into clinical trials. I was

treated in a National Cancer Institute clinical trial. I

believe that the treatment I got was first rate, from excellent

doctors, and the cost to me was zero. I was, in effect, a

guinea pig for a method of targeting radiation that was unusual.

However, five years later, I'm still here and I appear to be

cancer free. You can find clinical trials at:

http://clinicaltrials.gov

and

http://www.cancer.gov/clinicaltrials/search

If you use the second form, select prostate cancer, try stage II

(unless you have other stage information from your diagnosis),

treatment. Then enter your zip code and how far you are willing

to travel for treatment.

Hopefully, you'll get a number of trials that will apply to your

husband's condition. You can then call the phone numbers to try

to find more information.

Best of luck with this and please keep us informed about what

happens.

Alan

[Guest guest]

There was a time, when PC was only an Old Mans illness. Not found until he was 68,or 74. That's when the Doctor would say let us watch and wait. Most men their age would not survive the open type of surgery, and they had little interest in sex and their lifespan was shorter than now. When I had my surgery, the next patient was only 26. If you look at the ages of men getting this and other reproductive cancers is on the rise. To say it is a slow growing cancer does a disservice to anyone trying to understand whats happen to them. My kidney cancer, like my prostate cancer, was fast growing , very aggressive, very malignant. Found on 12-06-06, removed 01-31-07. On the day we removed my kidney, it was 98% of the kidney, inside and out, but the 2% left was still producing clear, normal urine with no blood. I had

felt no pain, no discomfort. Had I waited for the blood to test in my urine, it would have been to late to do anything. I know of young men, 16 and up, who find out the have the same cancers that only our fathers or grandfathers had when they were 70 or older. If the numbers are low, a Cancer Doctor, not a GP, should make the call, and most are not waiting. Some type of treatment is tried, stop the growth and start the recovery. For whatever reasons, hormones in meat,milk, chemicals in our water, cancers are showing up at a younger age than our parents Both my grandpearents, and my Father, who died at 53, from the same type of cancer cells that I have. I was told, at 17 to test yearly for cancer and everytime I hear someone has passed due to cancer, I wonder if they just watched and waited. Thanks, otey236> My husband was v ery recently diagnosed, after kindey failure, due to> prostate blockage, which turned out to be cancer. Had a bone scan, > which was negative. We don't have health insurance,and don't know > what to do next. We have an app't on this Fri., with the urologist. > Mrs. T.If the Ts are broke, a state/federal program called by various namesthat amount to Medicaid (not Medicare) is likely available and should bechecked. The

uro may know about it. Or explore the state's website.I know of a man here in Arizona who got the very best tx under that program.Here's my welcome: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 shouldnever, ever, be relied upon as authority for one's own decisions. Inother words, what helps me might harm you and vice versa.There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410]

955-2162 Grignon (Michigan) [313] 745-2520Jon Oppenheimer (Tennessee) [888] 868-7522UroCor, Inc. [800] 411-1839This is a "second opinion" and should be covered by insurance/Medicare.The cost, last I heard, was about $350. More if further tests, whichmight be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://prostate- cancer.org/ index.htmlis an excellent beginning.See also http://prostate- cancer.org/ education/

education. html#newly_ diagnosedSome medics who specialize in treatment (tx) of PCa are listed viathis portal: http://prostate- cancer.org/ resource/ find-a-physician .htmlIf a particular medic is not suitable due to distance (but there are menwho travel thousands of miles for treatment) or otherwise, there is noharm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but whoreceive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa: _A Primer onProstate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" bymedical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+

five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo. com/chapter_ nearyou.aspRegards,Steve J"Know your enemy. Get educated. But also know that it won't be easy. Itwill be confusing, overwhelming and depressing. That is the nature ofcancer and thus the very educational process as you regain control."-- YoungPhoenix 5