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Florida Connection Newsletters

As a
survivor since 2005, my primary goal is to help increase
awareness to what’s
going on in the world of prostate cancer.
In doing
so, I have done a newsletter for some
13 support groups in Central Florida for 2
½ years.
Information
comes from credible Internet sites
and individuals who direct me to other
sources.
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MORE GOING ON THAN PEOPLE REALIZE -- Based on 2 1/2 years of providing
newsletters, I find there's more going on with prostate cancer
awareness, education, support and research than most people realize. Although
prostate cancer still doesn't receive as much attention as some other cancers,
I find people are as surprised as I am about so many good things now
going on relating to “our” condition. I know people are
surprised because of appreciative comments on my newsletter from
support group personnel, attendees, medical and marketing personnel at
hospitals and clinics and from doctors as well.
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THE CONNECTION – As interest in the information I provide increased,
growing from four support groups to 13, several individuals recently told me
about several Web sites developed, one developed by a survivor, the other
developed by the wife of a husband stricken with prostate cancer.
1. The
first was Nelson Boudreux who started boodrow.com a few years ago. After
some conversation, Nelson allowed me to become part of his terrific Web
site.
2. Next
was psa-rising.com, a site developed in 1997 by the wife of a husband who
had been enrolled in a clinical trial for men with hormone-refractory
prostate cancer.
In this
way, boodrow.com and
psa-rising.com and I have connected, or networked, in
joining to spread our information to a larger audience.
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A MONTHLY TWO-PAGER – Newsletters from other parts of the country
that appear at boodrow.com do an excellent job of providing in-depth medical
information on treatments and research. My goal is not to compete with them,
but to supplement their information.
In doing
so, my monthly two-pager sometimes includes complete articles, other times I
summarize info for quick reading and always include a link to the source.
Sources
and topics range from awareness campaigns to information from top sources of
information on prostate cancer and other men’s health issues.
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AWARENESS CAMPAIGNS ARE GROWING – These two organizations are doing a
terrific job of developing programs to increase awareness, education and
support.
§
Prostate Conditions Education Council (PCEC)
-- Prostate Cancer Awareness Month each September also includes PC Awareness
Week (PCAW), a 6-day campaign that features free or low-cost screening
locations around the country.
§
Prostate Cancer Foundation (PCF)
-- There many support and awareness programs organized each year by this
philanthropic organization. Pro and amateur sports and corporate sponsors are
big supporters in these programs.
More
information on these two organizations and other sources of information are
listed below.
1. American
Cancer Society (ACS): cancer.org
Information and Resources
for Cancer. The American Cancer Society is a nationwide community-based
voluntary health organization dedicated to eliminating cancer as a major
health problem by preventing cancer, saving lives from cancer, and diminishing
suffering from cancer through research, education, advocacy and service. ACS
also has a prostate cancer support group program called Man to Man.
2. American
Brachytherapy Society
(ABS):
americanbrachytherapy.org/index.cfm
Founded in 1978, the American Brachytherapy Society (ABS) is a nonprofit
organization that seeks to provide insight and research into the use of
brachytherapy in malignant and benign conditions. The organization consists of
physicists, physicians, and other health care providers interested in
brachytherapy. The mission of the ABS is to benefit patients by providing
information directly to the consumer, by promoting the highest possible
standards of practice of brachytherapy, and to benefit health care
professionals by encouraging improved and continuing education for radiation
oncologists and other health care professionals involved in the treatment of
cancer. Additionally, the ABS seeks to promote clinical and laboratory
research into the frontiers of knowledge of the specialty and to study the
socioeconomic aspects of the practice of brachytherapy.
3. Centers for Disease
Control & Prevention (CDC):
cdc.gov/cancer/Prostate/basic_info/treatment.htm
-- Through the National
Comprehensive Cancer Control Program, CDC has supported the
development of Comprehensive Cancer Control plans in all 50 states and in
several tribes and U.S. Associated Pacific Islands and territories. Many of
these plans include activities to control the burden of prostate cancer.
Publications developed by CDC include Prostate
Cancer Screening: A Decision Guide (PDF-118KB), which presents
a balanced approach to the pros and cons of prostate cancer screening and
enables men, their families, and physicians to make a decision that is right
for them. CDC also created decision guides specifically for African American
men and Hispanic men.
4. CyberKnife Society:
cksociety.org/
A focus for
the CyberKnife®
Society is to encourage and enhance CyberKnife adoption and radiosurgical
techniques in the worldwide medical community and among healthcare providers
and patients.
5. High Intensity
Focused Ultrasoun (HIFU):
www.ushifu.com
US HIFU, LLC is a privately held health care company focused on treating
primary and recurrent prostate cancer using HIFU, a minimally invasive
outpatient procedure which significantly improves patients’ quality of life.
US HIFU was founded in 2004 and is headquartered in Charlotte, N.C.
6. Men’s Health
Network (MHN):
-- menshealthnetwork.org
Men's Health Network is a national non-profit organization whose mission is
to reach men and their families where they live, work, play, and pray with
health prevention messages and tools, screening programs, educational
materials, advocacy opportunities, and patient navigation.
7. National Cancer
Institute (NCI):
cancer.gov/cancertopics/types/prostate
The National Cancer Institute is a component of the National Institutes of
Health (NIH), one of eight agencies that compose the Public Health Service
(PHS) in the Department of Health and Human Services (DHHS). The NCI,
established under the National Cancer Institute Act of 1937, is the Federal
Government's principal agency for cancer research and training. The National
Cancer Act of 1971 broadened the scope and responsibilities of the NCI and
created the National Cancer Program. The National Cancer Institute coordinates
the National Cancer Program, which conducts and supports research, training,
health information dissemination, and other programs with respect to the
cause, diagnosis, prevention, and treatment of cancer, rehabilitation from
cancer, and the continuing care of cancer patients and the families of cancer
patients.
8. National
Association for Proton Therapy (NAPT):
proton-therapy.org/
This is the Voice of the Proton Community in the U.S. NAPT promotes
the clinical benefits of proton beam radiation therapy for cancer patients and
their families. Founded in 1990, NAPT is an independent, non-profit, public
benefit corporation. It serves as a resource center for cancer patients and
their families, physicians and health care providers, academic medical
centers, cancer centers, the U.S. Centers for Medicare and Medicaid Services
(CMS) and other federal health care agencies, members of Congress and staff,
and the nation's news media.
9. Prostate Cancer
Conditions Council (PCEC):
prostateconditions.org/
Our mission is to save lives through awareness and the education of men,
the women in their lives as well as the medical community about the prevalence
of prostate cancer, the importance of early detection, available treatment
options and other men’s health issues. To conduct nationwide screenings for
men and perform research that will help the detection and treatment of
prostate cancer and other mens health issues.
10. Prostate Cancer
Foundation (PCF):
prostatecancerfoundation.org/
The Prostate Cancer Foundation (PCF) was founded in 1993 to find better
treatments and a cure for prostate cancer. The PCF has funded more than 1,500
programs at nearly 200 research centers in 20 countries around the world. Its
advocacy for increased government and private support of prostate cancer
programs has helped build a global research enterprise of nearly $10 billion.
11. Prostate
Cancer Research Institute (PCRI): prostate-cancer.org/
The Prostate Cancer Research Institute mission is to improve the quality of
men’s lives by supporting research and disseminating information that
educates and empowers patients, families and the medical community. Material
provided by PCRI is intended for educational purposes for discussion with your
physician and should not be considered as medical advice. Information and
opinions expressed on this Web site are not an endorsement by PCRI for any
treatment, product or service.
12. PSA-rising:
psa-rising.com/
An excellent site developed in 1997 by the wife of a husband who had been
enrolled in a clinical trial for men with hormone-refractory prostate cancer.
The site offers cancer information and medical news with pointers to quality
treatments plus opinions from men and partners living with prostate. The site
includes a blog where individuals ask questions and exchange information. psa-rising.com/blog/
13. Robotic
Surgery: davincisurgery.com
Website designed to inform patients and their loved ones about what may be
the most effective, least invasive surgical treatment option available today.
Here, you can become better informed about different approaches to surgery.
This knowledge will be valuable as you discuss treatment options with your
doctor. Thanks to a breakthrough surgical technology, there is a new category
of minimally invasive surgery for which you may be a candidate. It is an
effective, minimally invasive alternative to both open surgery and laparoscopy.
Through the use of the da
Vinci® Surgical System, surgeons are now able to offer a minimally
invasive option for complex surgical procedures.
14. The Urology
Channel: urologychannel.com/
Developed and monitored by board-certified physicians, urologychannel
provides comprehensive, trustworthy information about urologic conditions.
15. TomoTherapy:
tomotherapy.com
This treatment delivers image-guided intensity-modulated radiation therapy for
cancer treatment.
16. Us TOO:
ustoo.org/
Us TOO International Prostate
Cancer Education & Support Network
helps prostate cancer patients and their caregivers find the resources they
need to fight their disease. Us TOO provides support groups and a newsletter
called the Us Too HotSheet.
17. Zero – The
Project to End Prostate Cancer: zerocancer.org
We commit ourselves not only to reduce prostate cancer or alleviate the
pain from the disease but to end it. We see a future where all men who have
been diagnosed with prostate cancer will be cured or manage their illness with
good quality of life, with the support they need to minimize physical and
emotional suffering and to cope effectively throughout their cancer journeys.
To accomplish our goal, we provide comprehensive treatment information to
patients, education to those at risk and conduct free prostate cancer testing
throughout the country. We increase research funds from the federal government
to find new treatments and we fund research in pursuit of a better test for
the disease.
Although these sources
are national in scope I may have overlooked others. In addition, there are, of
course, numerous sites from various clinics, hospitals, and other
organizations.
If you know of other
sources worthy of consideration, please submit them to me.
Sincerely,
Phil Masley
Prostate Cancer Survivor
Orlando, Fl
FloridaProstateConnection@yahoo.com
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