When Laura Pike was preparing to receive a double mastectomy, she wondered what to expect. Scouring Google at 3 a.m. left Pike disappointed. So she created The Empowered Mastectomy, a website resource featuring people who have undergone the process. She joins us with details on the project and why it’s needed as a resource.

THANKS TO OUR SPONSOR:


The following transcript was created by a computer and edited by a volunteer.

Geoff Norcross: This is Think Out Loud on OPB. I’m Geoff Norcross. A couple of years ago when Laura Pike was told she had breast cancer and needed a mastectomy, she was terrified of what her chest would look like afterward. Knowledge is strength. So she went looking for post-surgery pictures and found practically nothing. It was like this secret [that] even the internet didn’t want to reveal. So she started her own website which has become an online gallery of hundreds of images of people who have gone through the procedure with many different results. Laura Pike is the creator of The Empowered Mastectomy website. She lives in Portland and she joins us now. Laura Pike, welcome to TOL.

Laura Pike: Hi Geoff, thanks for having me.

Norcross: So how did it make you feel to not be able to see what you wanted to see on the internet at that time?

Pike: You know, it was terrifying. I think our imaginations build things up to be a zillion times more scary than they actually are. And I would lay in bed up at night for weeks before my surgery, thinking like ‘what is going to happen, what am I going to look like?’ I was 36 years old at the time and especially as a young woman, especially the way that the media and society pushes us to have these perfect bodies, it was just absolutely terrifying.

Norcross: Your imagination ran away with you. Why do you think the internet was so unwilling to host images like that? On the internet, where you can see anything!

Pike: I think I was able to find some, but it took so long, and they were so spread out, and a lot of the pictures were of really scary complications that happened. And there was no real story or info that went with them. And so when you can’t kind of piece things together, that becomes more scary. And then there was no one place that I could go to that reliably had patients or people that were in my demographic. And there was no plethora of them. I can’t even tell you how many hours I spent looking through Facebook, Instagram, Google, looking for people my age that potentially had results that were the results that I wanted. And I eventually found some Instagram accounts of these people that [were] just amazing, beautiful, and they look so powerful, post-mastectomy. And I thought ‘why can’t we get all of these images in one place?’ So that when people are sick with cancer, they don’t have to scour the internet. They can just go to this website, and be ‘oh okay, this is how it goes’. And if they see a complication or a picture that looks scary, there’s information with it and education as to, “yeah, this can happen to you. These are the signs and symptoms that it may be happening to you so that you can access care quickly, so that maybe you don’t have an even worse complication”. It’s kind of piecing together the images with the information and education that was really important to me.

Norcross: When did you actually start building this site?

Pike: So I started earlier this year, probably around January. My sister was diagnosed with breast cancer as well, and she had the same complaint, that she could not find mastectomy images. I was going through my own reconstruction complication at the time. My chest did not look ideal. And so my sister was kind of probably going off of that, which was awful. I started reaching out in January to people through an Instagram account, and asking them basically to submit their topless photos to me and to trust me with them.

THANKS TO OUR SPONSOR:

Norcross: What kind of response did you get?

Pike: It was kind of a slow roll because in the breast cancer world, I was kind of a nobody. But people were trickling in, and for the most part, there were so many people that even if they didn’t want to submit their images, they were behind me 100%. They said ‘I had the same problem. I can’t believe this resource doesn’t exist.’ Breast cancer has been around forever. The Internet has been around forever. And why isn’t this a resource? Breast cancer. I mean it has its own huge month in October, where everything is painted pink. Why doesn’t this exist? And so overwhelmingly, the response was great. But it did take quite a bit of time to collect these images.

Norcross: There are some amazing images and beautiful and empowering ones. But they’re not all pretty. Why did you want to include the photos of people who had complications?

Pike: So originally my idea of the website was that I would be posting images that were beautiful. And by beautiful, in that sense, at the time, I was thinking ideal reconstruction results. And then I thought about what happened to me. I thought I was all done with my reconstruction, and then about a month later I got an infection. And I had to have one of my implants removed, and I was flat on one side for a while, and you know, it was a saga and I felt like I had failed somehow. I felt like I had done something wrong. And I realized that if I only post pictures of ideal results, that is going to lead to so many people feeling like they did something wrong, if they have an infection, or if they have a complication. I want this website to be all inclusive. I want it to include everybody, and make everybody feel like they’re not alone. And that they have options. Because even if you get a complication, you still have options. And there are journeys that you can follow on this website of people that have photos that look really scary. But then it has kind of like their end result. So you can follow a story that shows you that the outcome can be good too.

Norcross: You got photos from men too.

Pike: I thought that was more like a recent edition a couple months ago. I thought, ‘how can I make this site more inclusive?’ I really want there to be lots of people of color on it. I want there to be people that identify with every gender on it. And then I thought ‘I want men to be on it’. I realized, I don’t think I had ever seen a man that had had a mastectomy surgery after breast cancer. And this is kind of important to me, because I have the BRCA 2 gene mutation, which I inherited from my father, and my dad has to go get mammograms for screening now, because he’s at higher risk for breast cancer too. And I thought ‘that’s crazy that I’ve been so involved in the breast cancer world, and I’ve never seen a man with a mastectomy’. So I reached out to a few different organizations, and the Male Breast Cancer Coalition. They have been so fantastic with connecting me with men that are willing to share their photos too.

Norcross: If you’re just tuning in, we’re talking right now about the website, The Empowered Mastectomy. Laura Pike lives in Portland and she started the site. Laura, I would imagine getting photos like this online would require some careful negotiating with website hosts and social media companies. Can you talk about that?

Pike: So I actually hired a lawyer, to make sure that I was crossing all my T’s, dotting the I’s and that everybody’s submitting images would be as protected as possible from weirdos online. I hired a web design team, Oblique from Portland. They’re fantastic, and they were able to put my website together in just a gorgeous way. I had no idea how to do techie web stuff and that was part of the slow roll of the website coming out.

Norcross: [What about] any of the societal or ethical or even legal considerations of putting photos like this online? I mean, did you have to navigate that?

Pike: There’s a big frustration in the breast cancer world because there’s no great platform to post images to educate each other. My original Instagram account was disabled because now, I was posting mastectomy images, although Instagram has a policy that says you are allowed to post mastectomy scars. I had a huge following, and I had worked so hard because it was the platform I was going to launch the website off of, and I woke up one day and it was gone. I fought for a month trying to get a hold of you know, Instagram, aka Facebook and I heard nothing, and it was devastating. This has happened to so many people out there that are just trying to educate other people that have cancer. And so I thought that kind of pushed me more, and sent more of a fire under me, to create a website where it’s not going to get deleted, it’s not gonna go away. It’s protected. People can come to it and they can submit their images. There’s an upload form, and they can submit their images and not worry about all of the work, the whole story that they put into it, disappearing one day.

Norcross: Laura Pike, it was a pleasure to talk to you about this and best of luck to you. Thank you so much.

Pike: Thank you Geoff, I love you!

Norcross: We love you too! Laura Pike lives in Portland and she is the force behind The Empowered Mastectomy, which you can find at empoweredmastectomy.com

Contact “Think Out Loud®”

If you’d like to comment on any of the topics in this show or suggest a topic of your own, please get in touch with us on Facebook or Twitter, send an email to thinkoutloud@opb.org, or you can leave a voicemail for us at 503-293-1983. The call-in phone number during the noon hour is 888-665-5865.

THANKS TO OUR SPONSOR:
THANKS TO OUR SPONSOR: