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.
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