Miss America, part deux - preventive mastectomy

[WOT?*]

todayhealth.today.com/_news/2013/01/11/16463704-miss-america-contestant-gets-hate-mail-over-mastectomy-plans?lite=


Miss America contestant gets hate mail over mastectomy plans

By Adrienne Mand Lewin, TODAY.com

B. Vartan Boyajian / AP


Allyn Rose, 24, plans to undergo a double mastectomy after the Miss America pageant as a preventative measure to reduce her chances of developing the disease that killed her mother, grandmother and great aunt.

She’s a former punk rocker who does artistic rollerskating and plans to have a double mastectomy to protect herself from getting breast cancer. Allyn Rose is not your typical contestant vying for the Miss America crown.

“I was a huge tomboy growing up,” Rose said. “I know, every pageant girl says that, but I was in a punk rock band with a leather jacket and a boyfriend with a mohawk.”

The 24-year-old Miss District of Columbia first entered the pageant world three years ago in a contest dedicated to breast cancer awareness, which she chose to honor the memory of her mother, who died from the disease when Rose was 16.

First diagnosed with aggressive breast cancer at 27, Rose’s mother’s cancer returned when she was 47 and she died three years later.

In addition, Rose’s grandmother and great aunt both died from the same disease. She has been found to carry a rare genetic disease – not the well-known BRCA1 and BRCA2 genes but another condition, a rare genetic mutation that puts her at risk. “For me, breast cancer is not a matter of if. It’s almost a matter of when,” she says.

Rose is planning to undergo a prophylactic double mastectomy after her year of service as Miss D.C. or Miss America. Her doctors are monitoring her health in the meantime through sonograms and vigilant check-ups.

Her pageant platform, “Breast Cancer: Planning a Marathon, Running a Sprint,” is a tribute to her mom, a marathon runner.

She plans to teach other women how to take control of their medical needs. “I don’t ever want to face the same battle that my mom did,” Rose said. “My mission is to teach people how to be pro-active in their health care.”

It took some careful consideration before deciding to go forward with the surgery. Her father suggested it to her when she turned 18 but she wasn’t ready to hear about it then.

“I said, ‘I’m not going to have my breasts removed – I just got these,’” Rose recalled. “It took me a few years to realize the wisdom and that he wanted me to live and for me not to leave my husband. This can really help prolong my life. The beauty in my life is living, and my mother would have given up anything in her life to be here for me … for myself, for my kids, for my future husband, it was a very easy decision for me to make.”

She added, “To be an advocate in women’s health care and take control of my body has been incredibly empowering.”

But it’s worth noting that the preventive surgery Rose has decided on has caused some controversy among those in the medical world.

"We're seen a rise in prophylactic mastectomies and a lot of it is not for a medical reason; it is because of fear and anxiety," Sandra Swain, medical director of Washington Cancer Institute in Washington, DC, told the Associated Press.

And Rose’s outspokenness about her plans to have the surgery have even attracted hate mail from some – and there are even those who are convinced she’s making it all up in order to attract media attention, she told the AP. "You have people who say, 'Don't have the surgery. This is mutilating your body. You don't have cancer.' They want to pick apart every little thing," she said in an interview with the AP.

But Rose is used to doing things a little differently from her peers. When it comes to the talent portion of the competition, Miss District of Columbia will shake things up with an artistic rollerskating routine. Much like figure skating but on four wheels instead of blades, she said, artistic rollerskating involves lots of jumps and spins. She has competed in the sport for 10 years and was a national champion and silver medalist.

Her program will be done to Michael Jackson’s “Beat It’ with choreography by the group Breaksk8 of America’s Best Dance Crew fame, who will be in attendance to watch her perform. “I hope that by breaking the rules a little bit and putting myself out there with my avant garde talent more women are inspired to compete in the pageant.”

But to Rose, the most important part is having a platform to start a conversation about tough the medical decisions many women are facing. “It’s the power of one woman to touch the life of one woman,” she says

[pixy0stix]

I keep watching your siggy and not understanding. Is that a gun?

[WOT?*]

Not sure what it is. I needs me glasses and slow-mo. It had me mesmerized and laughing at the same time though.

[msmerymac]

My grandmother died from breast cancer after 12 years, at age 54. If my mother developed it, I would be in the doctor's office the next day getting tested for BRCA1 and BRCA2, and getting a preventative mastectomy if positive. Absolutely!

[emisi]

Really, people are sending her hate mail because, after three women in her family had breast cancer, she's having her breasts removed?

People suck.

[epphd]

People suck. I work with a woman who has a rare genetic condition that predisposes her to breast, colon, pancreatic and ovarian cancer. Her mother passed away from colon cancer at 45, and my colleague - at 28 - had stage 0 (yes, there is such a thing) BC diagnosed and just had a double mastectomy. It was out of well placed fear and common sense to make that decision.

I myself and heading to the high risk oncology clinic on Monday to talk about my plans. I just learned I have Lynch syndrome, so in addition to a risk of recurring or even new colon cancer, I also have about an 80% of uterine cancer, 10% chance of ovarian cancer, and increased risk of other genitourinary cancers. I don't have it yet, but why THE FUCK would I keep my uterus? And if it's acceptable for me to have my uterus removed given my risk - why is it not acceptable for this young woman to have her breasts removed? Is it because they're pretty and she'll be less so? Is society so breast obsessed that even with a near guarantee she will develop breast cancer she should keep them? Good for her and the haters can fuck right off.

[meshaliuknits]

Jesus people can be dicks about things that don't involve them at all.

eephd, I'm sorry to hear about your new diagnosis. If anyone deserves to catch a break, it's you.

[marie427]

Epphd, I'm sorry to hear about your diagnosis.

If I were dealing with a genetic disease and family history that this woman is dealing with, I'd probably do the same. It's a big decision but i am sure she has spoken with doctors and determined that this is the right decision for her. So screw anyone who criticizes that decision.

[Deleted]

epphd, I'm so sorry to hear that. I'm thinking of you.

People need to leave this girl alone, FFS. It's her body.

[basilosaurus]

What's to hate? This is some of the most absurd bullshit I've read in awhile.

[wrathofkuus]

Well, there is some controversy over whether prophylactic masectomies actually reduce the risk of cancers in that area at all, though I doubt the hate mail comes from people who are informed enough to know that.

[Deleted]

I'm sorry,epphd

[epphd]

Meh, no worries. And actually, AFTER I posted this I got a call from my genetic counselor and it's not even as simple as "oh yep you have this mutation and this is your syndrome". It's more like "You have this mutation which makes us think you have this syndrome (because it's in a gene that is mutated in said syndrome) but there is some other shit going on that's really weird so maybe not. But really probably you have it. Or not. We're not sure. Maybe we'll do more tests. But there's only place that does those tests. And do you want to be in a study?"

Basically I am a giant fucking mystery so who knows what the fuck is going on. Maybe I'll know more on Monday.

End of the day though - I got colon cancer at 36 so we knew something is up - this isn't a huge surprise. I'm not upset by it, honest. I'd rather cut out organs that could go haywire any day than just ASSume all was well and good. And that's certainly how this young woman feels.