Action Alert: FORCE Responds to USPSTF Guideline Changes for PSA Screening
The United States Preventive Services Task Force recently issued a draft recommending against PSA screening for men of any age and risk status. Although the guidelines were not written specifically for men with BRCA mutations, FORCE is concerned that the proposed screening guideline changes may have serious negative health implications, lead to confusion, and make it more difficult for high-risk men to get insurance reimbursement for PSA screening. The USPSTF is accepting public commentary on these draft guidelines until November 8, 2011. Visit the FORCE website and learn how you can take action on behalf of high-risk men. |
Thursday, November 3, 2011
Help men at high-risk for prostate cancer
Friday, August 26, 2011
Dragonfly
I haven't come back to post on this blog since December of last year. Look at the month now, late August, almost September. But when I read the email that inspired this post, I could think of nothing other but opening another tab on my desktop, entering this site, logging in, and starting to write.
Not that there haven't been things I thought about writing about, other events of significance or import. But there were other projects and places that were occupying my attention, and the blog was quiet.
But this email seems intended to be put here, right now, even though I am not sure of its ultimate significance.
A few of my other writing pieces have me waxing on about the meaning of relationships, the friend who I am most suprised to have. Another contest asks when I first learned the meaning of love. These questions, and the ones I ask in my book always lead me back to the Big ? What the heck is life all about anyway?
The main conclusion I come to most of the time is hope. Believing in it, having it, living for it. I mean why else live unless you can imagine a likelihood of success and believe in possibilities?
The email that I got somehow seems to represent both the questions and the answers in one simple picture. It is from Caryn in MI who I have only really known for the equivalent of one day.
I had seen her in the hallways and showroom of the conference we were both attending, but we hadn't connected until the last day when we talked at a boot camp class in one of the ballrooms.
"I like your funky moves," I said to her bobs and weaves, little kicks, and great expressions as we went through the workout. “Thanks,” she said, looking like a sweaty Sarah Silverman. She gave a sideways smile and I could tell she liked that I said it. We talked a bit more in class between power intervals and then chatted after with a few other women leaving the class and heading for the elevators to shower.
Later that night a group of us met up at the pool party and Caryn was there. She was preoccupied because she really wanted to see the fireworks from the top of the building, but nobody wanted to go with her, until she asked me.
I never miss an opportunity to see fireworks. It reminds me of my mom, and of sweet times, and always pulls "ohhs" and "ahhs" of wonderment out of me at any age.
We went to the 54th floor of the hotel and watched the distant fireworks of Epcot center through the glass as we told each other the stories of why we were at the conference.
Caryn's mom died at 44, when she was only 14. Caryn's mom was one of four sisters. Three of them, including her, died from breast cancer. Caryn tested positive for the BRCA gene and she wanted to do something to stop a similar fate. So she joined FORCE at was at the conference to learn more.
Caryn's mother Irene (LowerLeft) and her sisters: Pat, Joan and Barb Unpictured is Joyce, who died of bone cancer at 18
I told Caryn my BRCA story and about losing my sister and mother to breast cancer. We talked about breasts and surgeries and loss, about our children, and our husbands and our sex lives, all in the space of under an hour while the not so spectacular fireworks shot up and fizzled in the background.
After an only fair grand finale we went back to the pool party for a bit and then said good-bye. Caryn left the next morning while I was enjoying a rare chance to sleep in. She stuck a card under my hotel room door that gave me the dates and fundraising information for her upcoming 3-Day Breast Cancer walk. I made a donation the next day before she even got back home, and we emailed twice over the months between.
Last week, when Caryn was about to leave for her walk, she sent me an email saying said she would be thinking of me and my loved ones as she walked.
"Walk with wings," I emailed back.
When I opened the email I am going to share with you now, I broke down crying. Instantly hit, smack dab in the heart, with a huge helping of hope and appreciation and love. And it got me blogging.
Thanks Caryn, the inspiration keeps going round and round. We should never forget that it is not about time spent with people, but the quality and connection that makes all the difference.
Sunday, December 12, 2010
Stop The FDA From Disproving Avastin To Treat Metastatic Breast Cancer
Please view this video or read on so that we can raise awareness about an upcoming FDA decision that will affect thousands of metastatic breast cancer survivors.
Avastin is an anticancer medication that many metastatic breast cancer patients respond to. As we move towards personalized medicine, we need better ways to evaluate who will and will not respond to a medication and assure that those medications that benefit subsets of the population remain available.
Both Komen for the Cure and the Ovarian Cancer National Alliance’s statement about this topi can be viewed at :http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452367 . The FDA decision on the drug Avastin was scheduled to occur on December 16, but has been postponed for the time being, so we have some time to act, but not much.
Please sign the petition by a woman for whom Avastin is the only drug benefitting her: http://www.thepetitionsite.
Write a letter/e-mail to the senior leaders at the FDA (Margaret Hamburg,margaret.hamburg@fda.hhs.gov; Patricia Keegan, patricia.keegan@fda.hhs.gov; Richard Pazdur, richard.pazdur@fda.hhs.gov; Janet Woodcock, janet.woodcock@fda.hhs.gov) and also send a copy of that letter to your congressman and senator. The mailing address for the FDA is 10903 New Hampshire Ave, Silver Spring, MD 20993-0002.
We need more choices in treatment not less.
Thursday, September 9, 2010
May the FORCE be with you!
This knowledge saved my life - now I want to pass it along. Will you help me? I will be on a radio show Friday called How She Really Does It hosted by Koren Motekaitis talking about all this. Tune in at 10-11am PT on 95.7 FM or via live webstream directly from Koren's websitewww.howshereallydoesit.com. There is a button to click to listen to the podcast.
Today FORCE begins an awareness campaign. Did you know that approximately 750,000 Americans are affected by hereditary breast and ovarian cancer. It is our goal for 1%, or 7,500 of our friends and family to join us on Facebook and help us spread the word about HBOC. We have 5,011 to go. Please suggest this page to your friends, share your stories and comments, and pass the word. We're grateful for your support.
Monday, August 9, 2010
Sunday, July 18, 2010
What makes us happy?
If you live locally, come see what my husband the Psychologist and a Buddhist Monk have to say about being happy.
Help raise awareness of Hereditary Cancers
Sweet Followers of this here blog,
I haven't yet used this forum to advance any agenda so far (I know I also haven't used this blog to do too much of anything SO FAR), but this issue is urgent and extremely relevant to the awareness raising I do hope this blog will generate. If you are with me, please read on:
This week, FORCE joined Congresswoman Debbie Wasserman Schultz (D-FL) to introduce HR#1522 – legislation to establish Hereditary Breast and Ovarian Cancer (HBOC) Week.
The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.” HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!
We need your help now! At least 100 co-sponsors are needed to pass the bill.
Let your House Representative know that HR#1522 is critical in the fight against hereditary cancer.
You may be asking: “How can I help?”
The answer is: Very easily! All you have to do is copy & paste what’s already written and it can all be done online in about 5 minutes!
1. Find your House Representative by going to this link: http://www.facebook.com/l/
2. Copy, paste and send the e-mail below.
Dear Representative____(delete this & put in your Rep’s name)_:
I am writing to urge you to sign on as a co-sponsor of the legislation to establish Hereditary Breast and Ovarian Cancer Week, HR#1522, introduced by Congresswoman Debbie Wasserman Schultz (D-FL).
The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.”
HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!
—You may wish to insert a statement on the personal impact. Personal notes make your correspondence more meaningful. If you insert a personal statement, keep it short (no more then 3-4 lines. Sample: I carry the BRCA1 mutation. I lost my Grandmother, Mother and Aunt to this disease before we knew anything about BRCA and it’s effects. The knowledge I gained about this disease allowed me to take steps that have significantly reduced my risk. I want to make sure ALL women (and men) have that knowledge.—
If you are willing to co-sponsor this bill, please contact Coby Dolan (Coby.Dolan@mail.house.gov) or Danielle Gilbert (Danielle.Gilbert@mail.house.
Thank you for your support.
Sincerely,
Full Name
Address (Including City and State)
______________________________
Thanks so much for your time!
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