Prostate Cancer Advocacy and Action

Please take a few minutes to help elevate OUR prostate cancer
nonprofit, Malecare. Though Malecare is known as our country’s leading gay men’s cancer support group nonprofit, we are committed to helping ALL men with prostate cancer.
Today, please take a minute to help Malecare achieve the recognition that ALL of our volunteers and participants desearve.
Please go to
http://www.greatnonprofits.org/reviews/malecare
, click on the “review” button on the left hand side of the page, and please fill out your “review” of our work in helping guys via the advanced prostate cancer online support group, and our in-person support groups (if you attend) and our websites, malecare.org, advancedprostatecancer.net and our book and articles, etc.

Please don’t feel you need to write long, time consuming reviews. But, your positive “vote” will be helpful in alerting our community that there are LOTS of guys like us out here, and we are helping each other fight cancer and live our lives.

http://www.greatnonprofits.org/reviews/malecare

Lighting candles during earth hour…very relaxing

The following statement about the recent controversy regarding PSA testing was issued this morning by the thirteen organizations , including Malecare

A JOINT STATEMENT FROM AMERICA’S PROSTATE CANCER
ADVOCACY, EDUCATION, AND SUPPORT ORGANIZATIONS

Since 1993, when the PLCO trial was started, we have
awaited the results of this trial with eager
anticipation, as have others. The initial report of
the results of this study — and those of a
comparable European trial — published last week in
the New England Journal of Medicine have told us two
things:

* The studies offer conflicting evidence about
the possibility of a prostate cancer-specific
survival benefit associated with the regular use of
prostate specific antigen (PSA) testing and digital
rectal examination (DRE).

* These studies provide no convincing evidence
that mass screening of men over 50 or 55 years of
age will lead to a prostate cancer-specific survival
benefit within 10 years.

We have come together to make two clear statements
about these trials:

* Above all we thank the patients, the
investigators, and the national authorities that
funded these two trials for their efforts. The
development and implementation of these trials over
the past 16 years has been an enormous commitment by
all concerned.

* We enthusiastically support the continued
follow-up of patients in the prostate cancer arm of
the PLCO study for at least a further 5 years,
through 2014, as originally envisaged.

In addition, in the long-term interests of the
health of every man in the USA, and with health
reform recognized as a national priority, we wish to
state the following:

* Every man, regardless of his age, has the
right to know whether he is at risk from prostate
cancer, a disease that still kills over 28,600
American men every year, and many more around the
world. We encourage all men to be proactive, and to
seek out information and support in regard to their
health.

* We shall continue to encourage every man to
discuss his individual risk for prostate cancer with
his doctors, and to request the appropriate use of
PSA and DRE tests until better options are
available. Further clinical action based on results
of these tests is also a matter for serious
discussion between each patient and his physicians.

* We call upon the federal government to
emphasize the need for more research into early
detection technologies and methods that will lead to
better and more accurate diagnosis of prostate
cancer.

* We call upon Congress to increase funding for
the Prostate Cancer Research Program at the
Department of Defense.

* We call upon the National Institutes of Health
to increase funding for prostate cancer research
through the National Cancer Institute.

* We call upon the medical research community to
place greater emphasis on the development of new
clinical tests that can differentiate between those
men at greatest need for aggressive prostate cancer
treatment and those with indolent forms of the
disease who can be well managed without invasive
treatment.

The statement above was approved by the following US-
based prostate cancer advocacy, education, and
support organizations:

* Malecare Prostate Cancer Support
* Men’s Health Network
* National Alliance of State Prostate Cancer
Coalitions
* Prostate Cancer Foundation
* Prostate Cancer International
* Prostate Cancer Mission
* Prostate Conditions Education Council
* Prostate Health Education Network
* The Prostate Net
* US Too International
* Virginia Prostate Cancer Coalition
* Women Against Prostate Cancer
* ZERO — The Project to End Prostate Cancer

Over 15,000 people signed our community’s petition to Make Prostate Cancer a National Priority at http://www.prostatecancerpetition.org . We were ready to deliver the petition to the new Secretary of HHS when Mr. Daschle withdrew from consideration. Now, we await the next Secretary and our new appointment to meet him/her. Until then, we continue to collect signatures. Have you signed? Most all of our national prostate cancer survivor and advocacy community’s nonprofits are supporting this effort. Please help with a minute of your time to sign, and another minute to let your friends and family know about our effort. Thanks. http://www.prostatecancerpetition.org All of us at Malecare, Inc. Fighting Cancer, together. http://www.malecare.com

It seems peculiar to me that presentations designed to inform men about the importance of early detection often fill the room with survivors… men who have already been diagnosed and are already extremely knowledgeable about early detection.

So, what’s the best case scenario?  Is it teaching my 12 year old how to eat right and be safe and healthy?  To adopt practices early in life that reduce his risk of developing cancer or, more likely, just reduce his risk of dying of it?  To encourage my 35 year old brother to be sensitive of our family history so we don’t have to experience more loss from this preventable cause of death?  God knows he is already “aware” as we shared losing our dad together… so talking to him about genetic testing… nagging him to screen annually and track his velocity… to make sure he knows what those results mean?

Social marketing is a term that gets tossed around in public health… it’s a novel concept designed to inspire revolutions.  But seriously, for the theory to work, don’t you have to start by designing programs and messages that inspire change within in groups and individuals that are most likely to adopt that change?  Who is that guy?  Is he a guy with health insurance or without it?  Is he already knowledgeable about health issues, or completely unaware?  Is he completely opposed to change, or concerned and willing to consider adaptations?

Further, if we don’t encompass within that message an underlying communication about the varying degrees of prostate cancer and the importance of knowing what yours is and how to manage it, don’t we create our own opposition?

What if you flip the message around and talk about the broad palette of options available with early detection?  Talk about the improved outcomes both in regard to survival and preservation of quality of life available with early detection?  Emphasize that, with early detection, you buy time to research and educate yourself?

Is that an easier pill to swallow?  Maybe just keeping it simple and about priorities like family and quality of life… maybe?

It appears that this year has finally caught up with me… last March - 85% of my home was destroyed in a flood.  My son and I were cooped up in a hotel for 3 months and, as anyone who has been through something like that can testify - you spend days sorting through old sentimental items, some destroyed and some salvageable, and each making you wonder what the heck is wrong with you for caring so much about some letter, picture, piece of fabric… it sucks.Sometimes these things are what we have left, to touch or read or look at, of some special time in our lives or to remember a lost loved one.  Something tangible that helps you connect to that memory.  My dad’s burgundy velour shirt and the smell of Old Spice… I couldn’t have been more then 6, but I remember hugging him in that shirt and breathing in his cologne… thinking he was the most wonderful man in the world.

So, the year is topped off with the loss of my grandmother - my last living biological grandparent… and I see, for the first time, this woman who was so much to so many people… outside of the context of who she was to me… my Grammie.  A smiling laughing beautiful girl full of hope, a world war II nurse, mother of 4, married and divorced and married again when you just didn’t do that… oldest sister to 5 impossible boys and one baby sister at the end of the pack of wild men… friend, volunteer, historian… 

I hope during this holiday season, we each take time to know each other in that big context… and to give everyone we love a big hug and remember it… your own respective velour shirt and big breath of Old Spice. 

My father was diagnosed with advanced prostate cancer when I was about 7 months pregnant with my son, currently my only child.  Now, we are a family of activists.  I in essence “inherited” our state prostate cancer coalition and perhaps the genetic predisposition to be an activist from my dad.  My son has grown up around prostate cancer… attending awareness events, taking grandpa to treatments… and I’ll admit - I’ve worried about this.  Now that he is moving into his adolescence, I am beginning to believe that this experience and exposure has done something wonderful for him and someday the world… at 11, he founded and is the leader of a comic book club for his school - a charter school with no art program.  He saw a need and came up with a creative solution to address that need.  Every week, he uses his own money to buy dinner for a particular homeless man that we always see.  Creativity, leadership, and a compassionate heart.  These are qualities that he has both developed, and chooses to act upon.  I believe that this is because he sees these qualities all around him.  One of the biggest benefits to doing this work is the wonderful people you end up surrounded by… my son, as a bi-product of our family’s loss, has been constantly witnessing acts of compassion, kindness, and concern - and he believes that if something is not right, you do whatever small thing you can to fix it.

For years, I’ve watched groups and individuals working to fight prostate cancer bite themselves in the butt.  It’s fascinating…

What leaves me speechless is the lack of compassion, understanding, and ultimate appreciation that these groups have for one another.  All around me I see greatness, groundbreaking leadership, unique individuals that lend something precious and irreplaceable to the cause… and 9 times out of 10 the best they can do for each other is criticize.

Hot topics of late:

1.  The blue ribbon – so what if not everybody likes it?  Some people do!  So don’t discourage them with words comparing the blue ribbon to the iron man (rather woman) of cancer causes – “breast cancer pink”… who the heck is that going to motivate?  Let them be grassroots… build it over time – just like our sister cause did… throwing a big BS wet blanket on it won’t help.

2.  Women in the movement – ok, yeah we’re important.  It’s way more manly to do it (screen) for your wife, daughter, mom… but all and all – we need to get these guys to man up for themselves… us chicks have enough on our shoulders;)  Know we love you, and do it!

3.  Who “won’t work with us” – who cares?  I only care who will… even if it is only on a fraction of our personal big picture.  We’re all not going to agree on every last point – so buck up and be friends on the points we agree on… all the rest will come out in the wash one way or another.

I recently saw a comment that “the word prostate itself is a turn off to men.”  OK… if that’s the case, you’re just not saying it right.  If you’re female, try a little breathy with a wink… if you’re male, guy it up like you’re in a locker room or something…What a ridiculous comment to make in regard to activism… I wonder if anyone has ever polled women on how they feel about the word “breast.”