2) Have a second opinion on Biopsy result by having core samples of biopsy slides examined by another institution, not just another doctor from the same institution.

3) Demand to know or include in blood test for Free PSA test on initial diagnosis.

4) For those who haven’t been treated yet, remember to abstain from sex at least 72 hours before going for the PSA blood test to avoid voiding the result. Likewise, demand to include C-RP (C-Reactive Protein) test every time one goes for a PSA test to rule out any infection anywhere in the body that could affect the result. By doing the 2 test simultaneously, the PSA reading could help explain variation.

NOTE: PSA test is not an accurate measure on growth of Prostate cancer cells, but in the absence alternative less invasive procedure available now, that is the quickest and relatively good indicator of possible growth.

5) Be your own advocate by educating yourself with contacts from fellow Prostate cancer survivors in various support group. Don’t just outsource the medical decisions to the first Doctor you met, because it is you who would have to suffer from the side-effects of the chosen procedure.

6) Run away from Doctors who easily claim to cure you from Prostate cancer. Medical institutions now have adjusted the definition of CURE as your survival for one year after the procedure. Most Prostate cancer patients lived for over a year without any procedure, because only the very late diagnosed patients with more aggressive types would pass away fast.

7) Whatever procedure one might chose after careful evaluation, chances of recurrence is very high as we grow older and after around 20 years for some. Only 20% may escape recurrence, because they could have died from other causes.

In the absence of a definite 100% cure, perhaps we just have to fight for a stalemate for a long time and hopefully allow us to die from other causes, because we are all mortals anyway.

9) We don’t have the technology yet with machines that can pinpoint microscopic Prostate cancer cells at this time. While Biopsy is a definite diagnostic tool, it is invasive and random at best, and so can be lulled by result of False Negative.

Fred Mills
Chairperson
Board of Directors

US Too, Inc.

Dear Mr. Mills:

On behalf of the Board of Directors, the dozens of volunteers and the many thousands of men whose lives Malecare has been privileged to aid, I offer our congratulations to US Too on its twenty years of service to our prostate cancer survivor community.

US Too’s work in developing and promoting prostate cancer support groups is well known and inspiring. Its education materials and events have proven informative and helpful to many men and their families.  And US Too’s recent efforts to collaborate with organizations such as Malecare have validated the power of united action and advocacy.  US Too has surely helped to diminish the pain caused to so many by Prostate Cancer.  Malecare joins US Too in celebration of its twentieth anniversary, with the hope that someday, soon, we will all see the end of suffering from Prostate Cancer.

Sincerely,

Darryl Mitteldorf, LCSW
Executive Director
Malecare
Men fighting cancer, together.

REPLY FROM FRED MILLS

Darryl

Thank you so much for your nice note about the 20th anniversary event. We appreciate the work that Malecare does and the collaboration opportunities we share.  Together we all can make a difference.  I will relay your message to our board.

Thank you!

Fred

A conversation about treating advanced stage prostate cancer, with James M. McKiernan, M.D. and Joel Nowak, M.A., M.S.W.

Dr. McKiernan is Vice Chairman of the Department and Director of Urologic Oncology at New York – Presbyterian Hospital/Columbia University Medical Center. He treats many patients with high risk cancer diagnoses.

Dr. McKiernan is actively involved with ongoing research programs focused on improving patient outcomes. He has authored and co-authored more than 80 articles, book chapters, and abstracts in the field of urologic oncology. His research and discoveries have been published in Urology, Journal of Urology, Journal of Clinical Oncology, Cancer, and Cancer Research.

Mr. Nowak is Director of Advanced Disease and Advocacy at Malecare and is a four cancer survivor; diagnosed with melanoma, thyroid, kidney and advanced prostate cancer.

The teleconference will last approximately 60 minutes.  We are accepting your questions in advance of the call.  Please email your questions to: questions@malecare. org

This is the first of a six part bi-monthly teleconference series focused entirely on helping advanced stage prostate cancer patients find state of the art treatment.

All teleconferences will be recorded and available for future listening at www.advancedprostatecancer.net and, starting in September, 2010, at the new, updated www.malecare.org

Conference Date: August 17, 2010

Conference Time: 6:00 PM ET, 5:00 PM CT, 4:00 PM MT, 3:00PM PT

Participant Dialing Instructions:

Toll Free Number: 1.800.868.1837

Direct Dial/Int’l Number: 1.404.920.6440

Conference Code: 786432#

email address for questions and to be on our email list for future teleconferences: questions@malecare. org

Hot off the press-   The U.S. Food and Drug Administration (FDA)  has approved Sanofi-Aventis SA’s new
chemotherapy drug for advanced prostate cancer.


The  drug, Jevtana (cabazitaxe) extended by nearly 2-1/2 months the lives of men with prostate
cancer tumors that resist standard treatment with hormones as well as chemotherapy.

The drug will be used after taxotere has failed.

Another break for men with advanced prostate cancer.

Lesbian, Gay, Bisexual and Transgendered cancer survivors, their friends, family and care givers, deserve complete and unfettered support by all of us, including the American Cancer Society. Homophobia is vile and life threatening, particularly to those who are vulnerable because of ongoing health care treatment.   Out With Cancer – The LGBT Cancer Project is our country’s first and leading LGBT cancer survivor support and advocacy national nonprofit organization.  We know that prejudice hurts LGBT cancer survivors, diminishing access to appropriate health care, elevating psycho-social stressors and reducing research into LGBT health care disparities.  To see our country’s largest cancer survivor nonprofit, the American Cancer Society give in to homophobia, is harmful to all of us.

The authors are Brian L. Egleston, Ph.D., Roland L. Dunbrack, Jr.,
Ph.D., & Michael J. Hall, M.D.

Here’s how the report starts: “We recently encountered proposed studies
that explicitly excluded persons in same-sex relationships.  We
therefore decided to gather data on clinical trials to see whether this
phenomenon is common.  We performed exploratory searches of the
ClinicalTrials.gov database1 to identify categories of studies from
which lesbians and gay men were likely to be explicitly excluded.”

Here’s another excerpt: “We sought explicit inclusion and exclusion
criteria that would restrict trials to heterosexual patients, such as
study requirements that participants be in heterosexual relationships.
We included only studies with sites in the United States.”

Here’s how the report ends: “Our results indicate that exclusion of
lesbians and gay men from clinical trials in the United States is not
uncommon, particularly in studies with sexual function as an end point.
It is likely that most gay and lesbian patients are unaware that their
sexual orientation is being used as a screening factor for participation
in clinical trials.  Researchers should be held to careful scientific
reasoning when they develop exclusion criteria that are based on sexual
orientation.”

Update Reaffirms the Importance of Shared Decision-Making
ATLANTA –March 3, 2010 – Newly updated prostate cancer screening guidelines from
the American Cancer Society reaffirm the recommendation that men should discuss the
uncertainties, risks and potential benefits of screening for prostate cancer before deciding
whether to be tested. The update is the first since 2001 and was done as part of the
Society’s regular guidelines update process. It included a series of systematic reviews
focusing on the latest evidence related to the early detection of prostate cancer, screening
test performance, harms of therapy for localized prostate cancer, and shared and informed
decision making in prostate cancer screening.
The guideline is published online in advance of print publication in CA: A Cancer
Journal for Clinicians. The updated guidelines include these recommendations:
*Asymptomatic men who have at least a ten-year life expectancy should
have an opportunity to make an informed decision with their health care
provider about screening for prostate cancer after receiving information
about the uncertainties, risks, and potential benefits associated with
screening.
*Men at average risk should receive this information beginning at age 50.
Men at higher risk, including African American men and men with a first
degree relative (father or brother) diagnosed with prostate cancer before
age 65, should receive this information beginning at age 45. Men at
appreciably higher risk (multiple family members diagnosed with prostate
cancer before age 65) should receive this information beginning at age 40.
*Men should either receive this information directly from their health care
providers or be referred to reliable and culturally appropriate sources.
*Patient decision aids are helpful in preparing men to make a decision
whether to be tested.
*Prostate cancer screening should not occur without an informed decision
making process.
*Asymptomatic men who have less than a ten-year life expectancy based
on age and health status should not be offered prostate cancer screening.
*For men who are unable to decide, the screening decision can be left to the
discretion of the health care provider, who should factor into the decision
his or her knowledge of the patient’s general health preferences and
values.
“Two decades into the PSA era of prostate cancer screening, the overall value of
early detection in reducing the morbidity and mortality from prostate cancer remains
unclear,” said Andrew M. Wolf, M.D., Associate Professor of Medicine at the University
of Virginia Health System and Chair of the Advisory Committee. “While early detection
may reduce the likelihood of dying from prostate cancer, that benefit must be weighed
against the serious risks associated with subsequent treatment, particularly the risk of
treating men for cancers that would not have caused ill effects had they been left
undetected.”
The authors say in light of ongoing uncertainties, including the uncertain balance
between benefits and risks, involving men in the screening decision is crucial. “With
these newly updated recommendations, the American Cancer Society places even
stronger emphasis on shared decision making between clinicians and patients,” said Otis
Brawley, M.D., chief medical officer of the American Cancer Society. “The decision
whether to screen should be made with the help of a trusted source of regular care. Men
without access to regular care should not be tested unless high-quality informed decisionmaking
as well as appropriate counseling and follow-up care for those who test positive
can be assured. Without those, community-based screening should not be initiated.”
“Previous guidelines from the American Cancer Society and other organizations
have discussed the importance of informed decision making for men who are considering
prostate cancer screening, however this update is the first to provide details regarding
what information about screening is needed for informed decision-making to occur,” said
Alan G. Thorson, M.D., F.A.C.S., volunteer president of the Society. “For that reason,
the updated ACS guidelines delineate the core elements of information necessary for men
to engage meaningfully in this decision, and encourage inclusion of this information in
patient discussions and decision aids.”
The guidelines also includes updated clinical recommendations regarding
screening tests, intervals, and follow up of abnormal results for those men who choose to
be screened after considering the possible benefits and risks. The guidelines acknowledge
the limited contribution of digital rectal exam (DRE) to prostate cancer early detection
and state that screening can be performed using PSA with or without the DRE. The
guidelines recommend annual screening for men whose PSA level is 2.5 ng/ml or higher,
but state that screening intervals can be safely extended to every two years for men
whose PSA is less than 2.5 ng/ml. The guidelines affirm that a PSA level of 4.0 ng/ml or
higher remains a reasonable threshold to recommend referral for further evaluation or
biopsy for men at average risk of developing prostate cancer; for PSA levels between 2.5
and 4.0 ng/ml, health care providers should consider an individualized risk assessment
that incorporates other risk factors for prostate cancer in the referral decision.
The update included a complete review of the evidence. The American Cancer
Society’s Prostate Cancer Advisory Committee, composed of independent researchers,
clinicians and lay people, examined systematic reviews done by scientific experts at
Emory University, Rollins School of Public Health, met to hear presentations by experts
both on the Committee and by invited outside experts, and deliberated the evidence
before making its final recommendations. The guideline underwent peer review before
going before the American Cancer Society volunteer Board of Directors for approval.
The authors conclude by noting the urgent need for better ways to detect and treat
early-stage prostate cancer, particularly the need to distinguish between cancers that do
not require treatment and those that are aggressive, to help “tip the balance clearly in
favor of screening. Until that time, however, it will remain incumbent on health care
providers and the health care system as a whole to provide men with the opportunity to
decide whether they wish to pursue early detection of prostate cancer.”
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