Newly Diagnosed – Read Me
By · Comments1) Start building personal medical file by getting every copy of medical procedure done on you, including the biopsy results, blood works, MRI, Bone scan and others. Patient have a right to demand a copy for each procedure and this will serve as your personal reference in the future to keep track of your own condition and not rely on various doctors.
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.
Malecare Congratulates “US Too” on 20 years of service.
By · CommentsFred Mills
Chairperson
Board of DirectorsUS 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
DarrylThank 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
Advanced Prostate Cancer Teleconference
By · CommentsMalecare Advanced Prostate Cancer Teleconference
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
Malecare first to announce Jevtana Approval
By · CommentsMalecare , via Malecare’s Advanced Disease Program Director Joel Nowak , is the first to break the following news:
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.
Malecare Prostate Cancer Support has new Facebook Page
By · CommentsMalecare now has an active page on Facebook. Please click here and “like” our Facebook page
or http://tinyurl.com/2amz3xy Help us show the world we are many and strong and worthy of more research for a cure or durable, morbidity free treatment for prostate cancer.
Anti-angiogenesis and Cancer
By · CommentsGreat talk on anti-angiogenesis and cancer http://www.ted.com/talks/william_li.html
Shine a Blue Light on the White House
By · CommentsShine a light on Prostate Cancer. Shine a Blue Light. Shine a Blue Light on our country’s leading symbol of democracy, The White House. An idea from Dan Zenka, the PCF”s V.P. of P.R.. Dan is also a 52 year old newly diagnosed prostate cancer survivor. Please send your own email to www.whitehouse.gov/contact, simply asking, Please shine a Blue Light on the White House, this September, for National Prostate Cancer Awareness Month. Select “Non-policy issue” and “First Family” in the pull down menu.
The American Cancer Society’s Pinellas County branch canceled an LGBT-focused Relay For Life that was scheduled for March 21, 2010. As described by the event’s organizer, Bobby Poth, American Cancer Society officials “ were worried about how the general public would react to an LGBT-targeted event [and] allowed personal beliefs to play a role in that fear, etc.”
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.
Clinical Trials That Exclude Gay and Lesbian Patients
By · CommentsThe March 18, 2010 issue of *New England Journal of Medicine* (Volume 362, #11,
March 18) includes a study: “Clinical Trials That Explicitly Exclude
Gay and Lesbian Patients.”
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.”
Here is the latest American Cancer Society Prostate Cancer Screening
Guidelines press release.
Please leave comments about these guidelines, by clicking to comment here
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. Read More→