Back in full FORCE

I just got back from our second FORCE meeting.  Both my mom and dad came to this one.  My dad–because he carries the BRCA genetic mutation–and my mom, because why not?  It was fun having her there.  She’s always a bit more emotional about the whole cancer thing than I am but I get it, I’m a mom too.  Anything that happens to your kids is way worse than if it happened to you.  Anyways, we made it through the year.

Quick funny story–or maybe not so funny story.  Several years ago, she joined Weight Watchers–more to learn portion control, healthier eating and to support my dad.  Neither of them really needed to lose much weight but they did change their eating habits and became life members.  In order to be a life member, you have to go for monthly weigh-ins.  In the midst of my year, she went for her weigh-in and was told, she weighed too little and couldn’t come back without a doctor’s note.  Who goes to Weight Watchers and is told they don’t weigh enough?  Anyways, I’m happy to report she’s moved her way back up a bit so she doesn’t get kicked out of Weight Watchers.  Congrats mom!

So back to FORCE.  Lots of people have questions about BRCA, genetic testing and what it all means.  Many people look at me with a blank stare when they hear I have the “breast cancer” gene.  Others want to know if they should get the test and who they should call?  If I had to comunicate a few things really quickly and simply, I would say:

If you have a family history of breast or ovarian cancer, talk to a genetics counselor.  Anyone can draw blood and send it in for testing but here’s what genetics counselors can do for you:

1.  Navigate through the complex insurance situation and make sure your test(which can cost over $3,000 if you don’t know a specific mutation), is covered by insurance. 

2.  Sit down with you, deliver your results, explain what they mean and help you understand all your options.  They’ll spend an hour or more with you and help you navigate through the system.  Typically your family physician or OBGYN doesn’t have the time to do this for you and may even call you with results.  Hearing you have a gene that causes cancer is sort of tough to swallow but probably tougher if you are sitting in the car with 4 kids in the back seat and your cell phone rings.  This didn’t happen to me but it has happened to other people(not sure about the 4 kids in the car but it’s possible). 

3.  Help you understand GINA and other laws that protect you against discrimination.  GINA finally passed and as of May 09, the health insurance aspect will take full effect but right now there are other laws to protect you.  By the way, GINA doesn’t cover life insurance, disability insurance or long-term care insurance so you may want to make sure you are covered with those before you get the test.

4.  Send you to a FORCE meeting if you are BRCA positive so you can hang out with me. 

The more I learn about FORCE and the more involved I get, the more excited I get.  It’s such a fantastic organization.  I’ll be fundraising for these guys soon too but I promise I won’t hit you up for donations–not anytime in the very near future at least.  I’m going to look for fun ways to raise money and see if I can find some good corporate partners.  We have to make sure this organization sticks around because they can do so much for so many women.  Not just support but making sure there is continued research specific to BRCA and making sure hereditary cancers are on the agenda of major health organizations.  BRCA affects over a million people and FORCE is the only national non-profit organization devoted to the issues of hereditary breast and ovarian cancer.  It’s enough to get me going.  Still working hard on fundraising for the 3-day, still hoping to reach the $75,000 goal but now adding FORCE fundraising as a priority.  Got any ideas, send me a comment.

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Posted on August 12, 2008, in Uncategorized. Bookmark the permalink. 2 Comments.

  1. Nancie Petrucelli

    Hi Ellyn-

    I am a cancer genetic counselor with the Barbara Ann Karmanos Cancer Institue and read your blog, which is very encouraging of people to seek genetic counseling. Thank you. In addition to all of the things you said, we also give each client perspective of their risk, not only for the development of cancer based on their familly history, but for inherited cancer as well.

    In my experience, most clients believe their risk is much higher than it actually is. So in many ways, we are providing reassurance through our assessment of their history and can educate them on their chances of having a BRCA1/2 mutation as well as the risks and benefits of such testing.

    We appreciate all of your efforts and our clients find great value in the FORCE organization.

    Thank you.
    Nancie Petrucelli, MS, CGC
    Senior Genetic Counselor/Coordinator
    Cancer Genetic Counseling Service
    Barbara Ann Karmanos Cancer Institute
    Wayne State University
    4100 John R, 4HWCRC
    Detroit, MI
    313.576.8748
    313.576.8705 fax

  1. Pingback: Raising Awareness of Hereditary Cancer « Ellyn Davidson’s Weblog

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