Re: Welcome, “Crazy� :-)

[Guest guest]

Thank you Steve. Have you been diagnosed with PC? I have, and am leaning towards brachytherapy.Van http://twitter.com/vehausmanFrom: Steve Jordan To: ProstateCancerSupport Sent: Sat, April 3, 2010

2:37:34 PMSubject: Welcome, “Crazy†:-)

The address is so long, I’m afraid I’d wear out my poor ol’

fingers ;-)

Here’s my welcome for new folks, which I think would be useful:

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, 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://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]

Van, check out the Katten nomogram (a statistical calculator) on the Memorial Sloan Kettering Cancer Center website. Click on type of cancer, click on prostate, and you'll find a box on the right side of the page headed: Prostate Cancer Prediction Tool. Go to the calculator and fill in your scores (PSA, Gleason, etc.). It will give you the probability of being cancer free for 5 and 10 years for the various treatments. I found it very helpful in making a decision. There are lots of great articles on the website also.

Mike

Subject: Re: Welcome, “Crazy†:-)To: ProstateCancerSupport Date: Saturday, April 3, 2010, 6:05 PM

Thank you Steve. Have you been diagnosed with PC? I have, and am leaning towards brachytherapy.Van

http://twitter. com/vehausman

From: Steve Jordan <mycroftscj1@ cox.net>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Sat, April 3, 2010 2:37:34 PMSubject: [ProstateCancerSupp ort] Welcome, “Crazy†:-)

The address is so long, I’m afraid I’d wear out my poor ol’ fingers ;-)Here’s my welcome for new folks, which I think would be useful: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 MentorPhoenix 5There 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] 214-6628 [800] 214-6628 [800] 214-6628 [800] 214-6628Dianon Laboratories [800] 328-2666 [800] 328-2666 [800] 328-2666 [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043

[410] 955-5043 [410] 955-5043 [410] 955-5043 or [410] 955-2162 [410] 955-2162 [410] 955-2162 [410] 955-2162Jon Oppenheimer (Tennessee) [800] 881-0470 [800] 881-0470 [800] 881-0470 [800] 881-0470 Lucia (303)724-3470 (303)724-3470 (303)724-3470 (303)724-3470This 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 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://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 viathis portal: http://www.prostate -cancer.org/ pcricms/node/ 38If 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 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"Empowerment: taking responsibility for and authority over one's ownoutcomes based on education and knowledge of the consequences andcontingencies involved in one's own decisions. This focus provides theuplifting 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]

On 4/3/10, Van replied to me:

> Thank you Steve. Have you been diagnosed with PC? I have, and am leaning

> towards brachytherapy.

Yes.

I was dxd seven years ago.

My Gleason was 4,5=9 in six of seven specimens on one side of the

gland, and a 4,4=8 in the other, which was missed in the first

biopsy.

In short, my case was high-risk.

Leaving out a lot of interesting (to me) info, here I stand.

Until the wheels fall off. If they do. Before the proverbial

Jealous Husband gets me.

Best,

Steve J

" We must tailor the treatment to the nature of the disease. We

must listen to the biology. "

-- B. Strum, MD

Medical Oncologist

PCa Specialist