For the New Folks

[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 US$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.

See also

http://prostate-cancer.org/education/education.html#newly_diagnosed

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. "

[Guest guest]

Go along to http://www.yananow.net/pathlabs.htm

There’s a list of recognized expert pathologists there.

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 Cliff

Sent: Wednesday, 12 November 2008

8:26 AM

To: ProstateCancerSupport

Subject:

Re: For the New Folks

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]

Steve Jordan wrote:

>> Unfortunately in Virignia men with prostate cancer are not covered

>> under Medicaid.

> What!?

>

> OMG, what is the supposed justification for that atrocity?

....

Please forgive me if you regard this posting as off topic.

However it is a direct response to the really terrible situation

that some or our fellow cancer patients are in.

Steve,

I agree with your reaction. I too think it is an atrocity.

I don't live in Virginia and have no specific insights into why

they won't pay for prostate cancer treatment, but over the years

of following the prostate cancer newsgroup at

alt.support.cancer.prostate, and following the politics of

health care in the United States in general, I think I can

explain some of the attitudes that lead to a refusal to pay for

cancer treatments.

Many voters in the U.S. who have health insurance believe that

the reason they have it is because they have done what is

necessary to get it - study, work hard, get a good job that pays

for insurance, live within their means, etc. They also believe

that any adult who doesn't have health insurance doesn't have it

because he is too foolish or too lazy to have done what he

should have done. They regard government paid health care as

nothing but a " transfer of wealth " from the competent,

industrious and deserving folks to the incompetent, lazy and

undeserving folks.

These people, often living in states denoted by the color at the

long wavelength end of the visible spectrum, vote against the

legislation and the taxes that are required to pay for health

care for those who can't afford it. In such states, public

health authorities have no choice but to ration health care,

typically giving preference to children and to emergency care.

Prostate cancer care is not for children; it's not emergency

care in the traditional sense; and it's _very_ expensive. So

they don't, and in fact, can't, pay for it.

I personally believe that, if we examine the actual facts on the

ground, so to speak, we'll find that there are indeed

undeserving people. However there are also very large numbers

of people who have always worked hard, or tried to work hard,

but who got downsized, or layed off, or had their jobs shipped

off-shore, or who are disabled, or have had other misfortunes

that the rest of us might well consider to be in the category of

" There but for the grace of God go I. "

Alan

[Guest guest]

Alan very good response why.

Here is what is covered under the Virginia Medicaid program.

In order to be eligible for Medicaid, applicants must meet the non-financial and financial requirements for Medicaid and must be in one of the groups covered by Medicaid.

The four major groups covered by Medicaid are:

Medically Indigent Children and Pregnant Women (MI) - Medicaid generally provides coverage to pregnant women and children with countable family income below 133% of the federal poverty level (FPL) who meet the non-financial requirements. Eligibility under this component is determined without regard to the individual's resources.

Low Income Families and Children (LIFC) - Medicaid covers families who meet the non-financial requirements and the income and resource requirements.

Aged, Blind and Disabled (ABD) - Medicaid covers individuals over 65 and individuals with disabilities who meet the non-financial requirements and the income and resource requirements. Medicaid covers Supplemental Security Income (SSI) recipients who meet the resource requirements.

Long-Term Care (LTC) - Medicaid provides coverage to individuals who require care in a medical facility or whose care can be provided in the home and whose income and resources are insufficient to cover the cost of their care.

There is coverage for breast cancer under a CDC program. We tried to get something similar for prostate cancer but could not get enough support from the community to get their legislators to sign on to the legislation and we are going into a new congress. Looks as if the discussion the new congress will be about some sort of health plan.

Kathy

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Tuesday, November 11, 2008 8:37 PMTo: ProstateCancerSupport Subject: Re: Re:For the New Folks

Steve Jordan <mycroftscj1> wrote:>> Unfortunately in Virignia men with prostate cancer are not covered>> under Medicaid.> What!?>> OMG, what is the supposed justification for that atrocity?...Please forgive me if you regard this posting as off topic.However it is a direct response to the really terrible situationthat some or our fellow cancer patients are in.Steve,I agree with your reaction. I too think it is an atrocity.I don't live in Virginia and have no specific insights into whythey won't pay for prostate cancer treatment, but over the yearsof following the prostate cancer newsgroup atalt.support.cancer.prostate, and following the politics ofhealth care in the United States in general, I think I canexplain some of the attitudes that lead to a refusal to pay forcancer treatments.Many voters in the U.S. who have health insurance believe thatthe reason they have it is because they have done what isnecessary to get it - study, work hard, get a good job that paysfor insurance, live within their means, etc. They also believethat any adult who doesn't have health insurance doesn't have itbecause he is too foolish or too lazy to have done what heshould have done. They regard government paid health care asnothing but a "transfer of wealth" from the competent,industrious and deserving folks to the incompetent, lazy andundeserving folks.These people, often living in states denoted by the color at thelong wavelength end of the visible spectrum, vote against thelegislation and the taxes that are required to pay for healthcare for those who can't afford it. In such states, publichealth authorities have no choice but to ration health care,typically giving preference to children and to emergency care.Prostate cancer care is not for children; it's not emergencycare in the traditional sense; and it's _very_ expensive. Sothey don't, and in fact, can't, pay for it.I personally believe that, if we examine the actual facts on theground, so to speak, we'll find that there are indeedundeserving people. However there are also very large numbersof people who have always worked hard, or tried to work hard,but who got downsized, or layed off, or had their jobs shippedoff-shore, or who are disabled, or have had other misfortunesthat the rest of us might well consider to be in the category of"There but for the grace of God go I."Alan