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A college club for women with breast cancer gene

Dec 15, 2014

A meeting of the BRCAn't Stop Us Now club.
Credit Kate Wells / Michigan Radio

Is everybody at Grand Valley State University just ridiculously friendly and cheery? Is this a thing?

Even in the student club for women who have an extremely high risk of breast cancer, meetings are less Lifetime-movies-about-sadness-and-sisterhood and more like Legally Blonde: a dozen women laughing self-consciously through dance aerobics in leggings and breast-cancer pink tank tops.

“She’s a professor,” senior Bailee Orman whispers, nodding at the exercise instructor shouting “booty twerk! Booty twerk! That’s right, ladies! Excellent!” over thumping music.

When you're 21 and have up to an 80% risk of breast cancer 

Bailee Orman at a club meeting at GVSU
Credit Kate Wells / Michigan Radio

This is all happening after prizes were distributed for the winners of breast cancer trivia, which sounds, well, trivial, but club founder Mollie Smith has designed the questions to be healthful reminders.

"It's one [type of breast cancer exam] that people don't usually think about,” she hints.

"Self exams?” asks Sammy Roth, a freshman whose mom died of breast cancer when Roth was little. Roth’s hands go up to her own chest as she ventures the guess.  

"Yes!"

"Sorry, I just grabbed my boobs,” Sammy laughs.

In a quiet moment, Bailee Orman recalls her disbelief when she found out about the club.

“I didn’t even realize that people were around so close to me that I could actually get to, because who walks around campus going ‘I have a genetic mutation! Someone, anyone, do you have it too?’”

The club is called “BRCAn’t Stop Us Now,” and it’s part education and awareness effort, and part support group for GVSU students who have what’s called a BRCA (Breast Cancer) genetic mutation.

The mutation means these women have a 45-80% risk of having breast cancer in their lifetime, according to the American Cancer Society.

Their risks of ovarian cancer are also far higher than the general population.

Living in dual worlds: college, and cancer

Orman says she just assumed she would get breast cancer, ever since she was 9 years old.

So many women in her family have it.

"It's something I've always wondered: on a date do I say, I have a genetic mutation? But at the same time it's like, that's part of me."

Just before her senior year, she got her genetic testing results back. They confirmed what she’d expected: she is positive for the BRCA mutation.

In her family, breast cancer starts young, around late 20’s and frequently after pregnancy.

Which means Orman has to think through a maze of choices and decisions to make in the next 10 years.

"It’s something I’ve always wondered: On a date do I say, I have a genetic mutation? But at the same time it's like, that's part of me,” she says. “In the past it’s come up, when I’ve dated someone, that it’s likely I’ll be diagnosed with breast cancer. And most of the people I’ve dated have been cool about it.”

This is not the kind of question your typical college roommates are really equipped to answer.

But thanks to the club, Orman has someone to go to: Mollie Smith.

"I came here with this mutation, and I felt so alone,” she says. 

"There was no one here that I knew who had it. And I was like, what could I do to not feel so alone anymore?"

“There was no one here that I knew who had it. And I was like, what could I do to not feel so alone anymore?"

Smith is petite and blonde and does beauty pageants. She also seems like she could run a small country.

She started the club, which has been steadily growing ever since.

Meanwhile, she and Bailee Orman text every day.

They get coffee and talk about this weird dual-world they live in: on one hand they’re 21 and going to finals and parties, and on the other they’re BRCA positive, cycling through an endless, wearying series of doctors and screenings and tests.

"I found a lump on my breast a couple weeks ago," says Smith. 

"I found a lump on my breast a couple weeks ago."

She basically lost her mind for a few weeks. When her doctor’s office finally called with the results, she was taking a midterm.  

"It's really hard to think while taking an exam while you're wondering if you have breast cancer! And then I get out of the exam and I'm like, oh, a message, I hope it's not a bad call, you know? So I get the message and fortunately everything was OK. But you realize there are women who are as young as me who get cancer."

And that's the hardest part, the not-knowing if and when your genes will really try to kill you one day.

For Bailee Orman, she says most days she's fine. But on other days…

"It's more the not knowing if one day I'm going to wake up and not be around. But at the same time, I feel like I have time. Like in my gut I just feel like I have time."

"It's more like waiting and seeing – sorry, I'm going to start crying. It's more the not knowing if one day I'm going to wake up and not be around. But at the same time, I feel like I have time. Like in my gut I just feel like I have time."

And here's the one thing that is certain: neither Bailee Orman or Mollie Smith or any other of the young women in this club have to do this by themselves.