For the New Folks

[Guest guest]

Here is the website for proton centers, all 5. Each are linked to

this site for referrence.

http://www.proton-therapy.org

www.gleason10.com

>

> > Hi Steve, your suggestions are all good for the newly diagnosed.

I do

> > however, have a problem with the PCRI site in that it does not

> > mention proton beam therapy as an option. The word " proton " is

listed

> > in the glossary, but that is it.

>

> (snip)

>

> Searching on " proton beam therapy " results in 14 hits.

>

> Regards,

>

> Steve J

>

[Guest guest]

Here is the website for proton centers, all 5. Each are linked to

this site for referrence.

http://www.proton-therapy.org

www.gleason10.com

>

> > Hi Steve, your suggestions are all good for the newly diagnosed.

I do

> > however, have a problem with the PCRI site in that it does not

> > mention proton beam therapy as an option. The word " proton " is

listed

> > in the glossary, but that is it.

>

> (snip)

>

> Searching on " proton beam therapy " results in 14 hits.

>

> Regards,

>

> Steve J

>

[Guest guest]

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.

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

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, 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://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

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. "