Read the story of Casey, breast cancer previvor

Read the story of Casey, breast cancer previvor

by marlies|dekkers

“In some ways I feel like having surgery has made me accept my body more. I have all these scars, the illusion of being able to be perfect has been shattered. So I can either accept that, or I can hide away. I would rather learn to accept it.”

My name is Casey, I am an artist, I do some writing, I like trying new recipes and I love fashion. I was born and raised in America and after travelling across the country in an RV with my husband and three kids all of last year, to figure out where we wanted to live, we are now settled near the beach in Florida. I am from a big family, and a lot of us are BRCA-positive; meaning that we have the BRCA gene mutation which heightens the risk of getting breast cancer and ovarian cancer. I lost my grandmother to colon cancer and my aunt to ovarian cancer, but it wasn’t until my younger sister Erin was diagnosed with breast cancer last year that we all got tested for BRCA. Watching her go through her fight with breast cancer was probably one of the hardest things I’ve ever had to do. Seeing someone I love so dearly fight tooth and nail to survive, and suffer so much on a physical, emotional and spiritual level, was kind of a wake-up call for me. When my test results turned out positive, I knew pretty early on that I wanted to do something preventative.

Taking control

At first I thought that I would just get breast scans every six months, but I’m the kind of person that gets ‘scanxiety’ (the anxiety that you feel when testing and waiting for test results, it’s a thing!). I felt like I would basically just be waiting for them to find something. I’m 33 years old and I have young kids, I don’t want to live with that looming over me for the rest of my life. And so after having my uterus and ovaries removed in May, I had my preventative breast surgery end of June.

Going flat

I decided not to have breast reconstruction, but to ‘go flat’. I didn’t like the idea of them cutting into my muscles to place implants, I didn’t like the idea of something inside of my body -especially something that my body could reject or that could ‘pop’- and honestly, I didn’t like the idea of having more surgery than needed. I didn’t want to take more risks than the risks that I am already facing. The best way I can explain it, is that it just felt like ‘me’ to go flat.

Having been part of the ‘flattie community’ on social media, I realize how much women have had to fight for ‘flat closure’. It was not a given for surgeons to do that, sometimes they would just leave extra skin without the consent of the patient because “You are going to want implants in the future”. I went into the appointment with my surgeon knowing what I wanted, ready to fight for it, but I did not have to. My surgeon was very understanding, she even told me “You know, if you do change your mind, this is not irreversible. You can still get implants if you want to”. It was a lot more accepted than I was expecting, so I am eternally grateful for the women that have gone before me and have fought for flat closure as an option.

The flattie closet

Before my surgery I was having a really hard time finding pictures of women who had gone flat in clothes. There were pictures of the scars, and there were pictures of the surgery, but I wanted to see what it looks like on a daily basis! I wanted to know how their clothes fit, if they wear a bra, what their options are. That was the reason that I started my Instagram account @theflattiecloset; I am putting out there what I wished I had seen before surgery.

I’ve always loved fashion, I remember fighting with my mom over what I could wear when I was four years old. This is just a way to share my love of clothes, to encourage myself to get dressed and try new things, and to help people out there who are considering going flat to see that there is a whole world of clothing still available to you. It’s been a good challenge for me to see what still fits from my closet before I lost my boobs, and to try new things like super deep V necks. And it’s been a great excuse to get some new clothes!

The flattie community is fun because the freedom that people have experienced, not having breasts, is really interesting. I have seen this echoed on my account a lot; women feeling so free to choose to wear a bra or not, if they want to but not because they have to. Their positivity has helped me embrace my new shape.

Still me

I feel very much myself, although it is definitely weird. I get out of the shower and I go to dry off under my boobs and there’s nothing there! I actually sent my sister a picture of me in a bikini top this morning, saying “I am flat as a pancake!”. Sometimes it catches me off guard. I am in early menopause now, I have no boobs and I’ve been doing it all through corona virus. It’s been crazy! Of course I have my bad days. I’m wearing lounge wear and no mascara all the time, or crying about something surgery related. There’s a confidence and a lightness but at the same time there is a grieving process. So I just try to allow myself to have those days where I am less than okay.

Yet in some ways I feel like having surgery has made me accept my body more. I have these scars from my breast surgery and hysterectomy, and together with a C-section scar from one of my kids I have like 9 scars all over my torso. It has helped me accept that I am not perfect, and the illusion of being able to be perfect has been shattered. I have these scars now, I am not going to look like anything except who I am. So I can either accept that, or I can hide away. I would rather learn to accept it.

Advice

What advice would I give to someone who is in a similar situation? One: trust your gut. You know what is best for you. You will have a lot of voices around you, whether that’s your family or your partner, even within the breast cancer community or your doctors that are well meaning. But in the end only you will know what the right decision is for you. There is a lot of information out there, so go into your surgeon’s appointment prepared and ask every question that you have. Take your time -it took me probably six months to take my decision and then the next three months to sit with it- and switch surgeons if you need to.

And two: tap into a support system. Having people like my sister, who had been through it as well, has been invaluable for me. She chose to have a reconstruction, and even though we have made different choices it has been really helpful to go through these body-changes together. Make sure that there is someone that you can be honest with about it, because it will be a roller coaster. You will feel a new sense of freedom and a sense of relief that comes with the surgery, but you will also feel loss and mourning and grief. My family has been very supportive, and my husband as well. There has definitely been a mourning period on the sexual side of it too, but we’ve been working through it together.

To those supporting someone with breast cancer or BRCA I would say: do not push your opinion on people. Some people came to me like “Wow, that’s a big decision”, “Are you sure you want to do that?”. They didn’t understand that I had been thinking about it for almost a year, I knew what I wanted to do and I was confident enough to make my decision. If you have someone in your life going through this process, trust that they are going to make the right decision and just be there for them to support as they walk through it.

 

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