Disruptive Women’s Wendy Grossman interviewed Lindsay Avner, founder of Bright Pink. Lindsay Avner’s name might sound familiar to you — the 27-year-old made national news four years ago when she was one of the youngest women to have an elective double mastectomy to prevent breast cancer.

So many women responded to Lindsay’s story, that three years ago she started Bright Pink, a new, fun, breast cancer education, awareness and support group that has grown to 10 chapters nationwide.

Instead of hosting sad support group meetings in dank church basements, bright pink girls take yoga classes or belly dance together. Bright pink sends out monthly text messages reminding women to feel themselves up. Next month, they’re hostessing a burlesque show demonstrating self-exams.

“For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do,” Lindsay says.

Q: You had a double mastectomy when you were 23?
A: I did.

Q: Why?
A: I have a very strong history of both breast and ovarian cancer. My mom’s mother and grandmother died six days apart, both from breast cancer — they were 39 and 58. And my mom was only 18 when it happened.

In addition, there were 11 other relatives — aunts, and cousins on my mom’s side of the family that have passed away from these diseases.

I remember being a little girl and my mom saying one day I might have to deal with this. It was always present. It was never something that got brushed off and we said, ‘Oh, we’ll just deal with it tomorrow.” My mom was very adamant. She went to the doctor consistently every six months. When they said, ‘Come back in a year.’ She said, ‘I’ll see you in six months.’
Because of that, she really detected her own breast cancer. She had a completely clean mammogram. But she noticed a swelling on the side of her right breast. And she said, ‘I’m not leaving until I find out what this is.’ The doctor said, ‘You’re crazy. We just did a mammogram, you’re absolutely fine.’ She said, ‘You need to check it out.’

Sure enough, they went in and did a biopsy and they hit something and it was Stage 1 breast cancer.
And 10 months later she was diagnosed with ovarian cancer.

Q: Oh no!
A: She went through a lot at 41. I was 12 at the time. I grew up very fast. I switched from being a middle-schooler to Miss Mom helping care for my little brother. It was just really, really draining and hard and not an easy kind of thing. You know what I mean?

I graduated from Michigan in 2005 and decided to undergo genetic testing.

I went into it thinking, ‘Maybe I don’t need to be so focused on my breast cancer risk. On my fathers’ side of the family there’s no cancer.’ It was a 50-50 chance.

Unfortunately, I tested positive for the breast cancer gene — BRAC-1 in July 2005.

I made the decision in August 2006 — I was one of the youngest patients nationwide ever to have the preventative surgery. Do I want to do surveillance? Do I want to do surgery? What’s this going to mean? I’m single now.

It was very, very hard. I felt very alone through all of it. I wasn’t a cancer survivor, but yet I wasn’t like everybody else.

Before the surgery, I longed to speak to somebody who was young, and “normal”, and fun and had gone through it and came out on the other side and happy and okay, and actually did love her body and felt okay, and met Mr. Right.

I felt very alone. So I said, ‘I need to make this different for so many other people.’ I originally told my story about my surgery to the Chicago Tribune and the next day I was on the Today show.
It’s a shocking story. Here’s a woman whose healthy, who makes a decision when she’s young to remove her healthy breast tissue. More than 1,000 young women in their 20s and 30s reached out to the writers and producers. Time and time again, the story wasn’t necessarily I had genetic testing, it was, ‘My mom had breast cancer or my grandma had ovarian cancer.’

That’s really where the idea for Bright Pink came from. To know this information, is an opportunity generations of women never had. To be able to identify your risk, develop a strategy to be proactive, and live the rest of your life and be happy and live cancer free.

Q: What are you doing new with Bright Pink right now?
A: One of our favorite new initiatives is the underwire alert.

Q: So it’s a text message reminding you to do a breast exam?
A: It is. All they have to do is text the work PINK to the short code 59227 and they’re automatically enrolled to send them a fun, and cheeky message to just be aware of their breasts. To touch them, and look at them, and feel them and speak up if something changes. We’re trying to get thousands and thousands of women. This is one great, easy activity that all women can do.

Q: So are those shower hangy reminder things just not doing the job?
A: Here’s the problem, when you look at it every single day, it loses its meaning.

Q: And I don’t really like it in my shower. I took it down.
A: It’s true. And cancer societies are moving away from rigid once a month exams. You do this. You rub here. And you go in three circles. We do think the idea of once a month is really critical. It’s not enough to drive you crazy, and it’s consistent enough to notice any changes. We talk about how breast cancer can present itself, we talk about cancer fighting foods you can eat. Is that going to prevent you from getting breast cancer? I’m not God, I can ‘t control that. But there are things you can do to reduce your risk, and that’s something we really believe in.

Q: So what do the messages say? You say they’re cheeky.
A: If you look at the web site it says mind your melons, touch your tatas, treasure your chest. Whether you’re rocking 32A’s or DD’s, we want you to go to second base on yourself once a month…

Q: So how is it working out?
A: It’s great. We have a lot of people that love the idea of it. But we’re trying to get the idea aspect to get into getting people to actually signing up. We try to go into crowded places — every time we have a mic, we take a second and ask everyone to pull out their cell phones and text the code. The feedback we’re getting is, ‘Wow it actually makes a difference now I’m actually aware of my breasts.’

Here’s a sample text:
“Your boyfriend’s not the only one who should be touching your breasts. You know your body best. Go ahead, look for changes and feel yourself up.”

Isn’t this fun?

For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do.

Q: What else are you doing to shake things up?

A: We run these breast ovarian health 101 educational sessions. They’ve run in Chicago, we’re rolling them out nationally now. It’s a 40 minute session with an ob/gyn or a genetic counselor — we’ve gone everywhere from churches and schools to next Wednesday we’re going to a Hispanic Community Center. We say everything you need to know about your breasts, and then we have a pink cupcake and champagne reception.

And all of our chapters have once-a-month outreach programs.

It’s not your typical support group. When you think of a support group most people think of sitting around a table and everyone’s crying and it’s just so depressing. At Bright Pink, it’s all about doing something active. A lot of our girls have gone through really hard experiences — from losing a mother to a sister to cancer. To dealing with what it’s like to have a scare — finding something and waiting for the results. Their lives have been deeply touched by this disease. And yet there’s unbelievable hope and determination.

So they’ll do a yoga class or a belly dancing session. Our New York girls went hula-hooping. Our Atlanta girls did a Mexican fiesta night.

And they’ll have an organized discussion around a topic related to being young and high-risk. Anything from, If you’ve had a mastectomy, what happens when your shirt comes off with a guy you’ve just started dating? At what point is it right to bring this up? What can you expect in your first genetic counseling appointment? Or, how do you get your family to talk about whose had cancer when they just don’t want to talk about it.

Q: So you’ve taken support groups to fun activities that people actually want to do — but they can still share while they’re there.

A: FUN activities that people want to go to. If I was in a support group the idea of going would be, like, drudgery.

They’re all there supporting each other. And it’s a very kind environment. I know sometimes when you have a lot of women together, it can get a little clicky or a little kooky. Our girls have this deep positive energy that binds them.

Q: Tell me what you’re doing with LuxGoddess.com.
A: LuxGoddess has been a really incredible partnership. The founder and CEO, Scott Kluth, made a very generous donation to us.
There’s so much overlap between the target audiences. The same girls that are coming to our education sessions, are the same women he’s targeting that are looking for a pair of Seven jeans. Or a cute top they’re waiting to go on sale.

Q: So what are you guys doing together?
A: It’s a cause-marking partnership. They sponsor a lot of our events. And our educational information is on their website. And also, a percentage of sales goes to Bright Pink.

It’s a win, win, win all the way around.

There’s so many similarities between the LuxGoddess shopper and the Bright Pink girl.

Q: So what’s next for you?
A: We’re expanding our ambassador network. Chapters around the country are about to launch in Boston, San Francisco and San Antonio.

Our whole focus this year is underserved communities — like African American lesbian women.

A lot of people don’t realize that lesbian women are more likely to die of breast cancer.

Q: Why?
A: They’re not more likely to develop. But based on good health care and good access to health care and insurance

Q: Lesbian women have less access to health insurance?
A: They’re less likely to have good insurance.

Q: Lesbian women?
A: Lesbian women. They’re less likely to go to their doctor’s office and feel comfortable talking to their doctor about their issues.

Q: Why?
A: Think about the questions they ask at your ob/gyn. Like, How many partners have you had? Just the sexual questions can sometimes be quite daunting for them.

Q: Why would it be any different? I don’t think my gynocologist cares who I sleep with.
A: I think there’s just a lot of stereotypes that still exist. This is just what the statistics are.

Q: What else is new?
A: In a couple weeks were doing an educational burlesque show. That’s off-the-wall — talk about wild.

Q: What is it going to be?
A: Have you ever been to a burlesque show?

Q: No. I’ve seen Gypsy.
A: They do songs and skits, their shirts come off. They’re going to be integrating health facts. They may do a demonstration on how to do a breast exam. It’s a great way to reach that community. Last year we did one and had 220 women which was phenomenal.

Everyone has been having that old man with gray hair get up and talk. And he’s not getting through to this demographic.
We need a new way to have the conversation.

Q: And you’re doing it.

To find out more about how to become a Bright Pink Girl check out www.bebrightpink.org.

To get an underwire alert started sign up at this link: http://www.bebrightpink.org/programs/support-community/breast-self-exam-text-reminder/.

This entry was posted on Tuesday, February 16th, 2010 at 8:09 am and is filed under Guest Posts, Women's Health. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.