Damn the Man, save lives.

I’m having one of my “I hate Myriad” moments, and as unreasonable as these moments may often be, I felt the need to share.  Today on my “BRCA” google alerts, an article came up showing how Myriad’s stock shot up because of recent research that came out which may result in doctors recommending that more women be tested for the BRCA mutations.  I mean, I know that it makes sense that their stock would go up if their product is going to be in higher demand, but really, honestly, who patents a gene?? I still don’t even understand the concept fully; all I know is that patenting genes inhibits research AND it allows Myriad to keep the cost of the full BRCAnalysis at $3,000.  They can charge whatever the F#$* they want if they own the friggin’ gene people!  How else will we figure out our sadly mutated condition??   They also MARKET the test, which drives me insane.  Putting commercials on that make everyone think they should have this test is absolutely ludicrous.  This is not candy- this is a test that should only be recommended by your doctor and a genetic counselor after very thorough intake.

I feel like this is an exceedingly unfair assesment of Myriad, especially since they did pinpoint the gene and make the testing available, which has changed many lives.  But they’re definitely taking advantage of their position to make lots of money, and this just seems silly when you’re talking about profiting off of people’s misfortune.  This is why privatized healthcare is so bizarre!  It just doesn’t make sense that the sicker people are, the more money people make.  That just CANNOT lead to a fair system in which everyones’ health is top priority.

I apologize for the rant.  Maybe I should do some real research and write something a little bit more coherent.  Oh well, I deserve an angry outburst now and then.

Research Rocks

You know what rocks?  When researchers discover valuable information. Like…  Researchers studied a group of women who had been diagnosed with triple-negative invasive breast cancer at or before the age of 40. None of the women had a strong family history of the disease,  but it turned out that 11%  had BRCA mutations.  This is important because now, in the future, having early-onset breast cancer could be a criteria for qualifying for genetic testing.  The genetic testing then alters the course of treatment the woman recieves,  which could improve her chances at survival.  woohoo!  Read the real research, not just my shoddy interpretation, here:

The Prevalence of BRCA Mutations Among Young Women with Triple-Negative Breast Cancer

BRCA Umbrella

I just discovered this new social networking site for us BRCA mutants.  It’s really great!  You can connect with women all over the world who are facing similar challenges and decisions.  AND the design is really cute.  What more could you ask for?

Check it out at http://brcaumbrella.ning.com/.

To keep, or not to keep?

That is the question.

I have an appointment with my gynecologic oncologist on March 30th and I’m already thinking about it ALL of the time.  I saw her almost a year ago, and when I told her I thought I’d wait on having a prophylactic mastectomy until I was 30, she basically told me I was crazy.  After I gave her all of the information about my BRCA 2 mutation and my family history, she said “You need to get rid of your breasts by the time you’re 25.”

I was so shocked!  I mean, I don’t even particulary LIKE my breasts, but still, this was not what I expected at all.  Apparently they find that breast cancer in BRCA families tends to hit 10 years earlier with the next generation, and since all of the cancer in my family has been exceedingly young…

I’ve decided to have the surgery (as you can tell from the article I posted last time!), but I haven’t decided if this appointment, on March 30th, is going to be the day that I say “Yes, send me to a surgeon for a consultation.”  I have 3 weeks to make up my mind.  Wish me luck!

I’m famous!

Check out this story I’m featured in on ABC News.com!

http://abcnews.go.com/Health/CancerPreventionAndTreatment/story?id=6976928&page=1

Unfortunately, they didn’t include much information about why people decide to have these surgeries like the actual risk statistics and the statistics showing how much these surgeries cut your risk.  Also, living without a stomach and living without boobs are not exactly comparable..

My last complaint- did they have to call it “Going under the Knife”??  It makes it sound like we’re volunteering to lay on a butcher block, not having skilled surgeons operate on us!

All of that aside, it’s pretty cool to be in the news!

Shout out to my Support Networks

Today, I had a fabulous lunch with the NYC FORCE group.  FORCE has been such an incredible lifeline for me, and that made me think of the fact that I need to give a “shout out” to the incredible organizations that have made this whole experience so much better for me…

1. FORCE (Facing Our Risk of Cancer Empowered),  www.facingourrisk.org

2. Be Bright Pink, www.bebrightpink.com