Davina Simons: A double mastectomy at 21 years old

Hello. I'm Davina, nice to meet you.

23 years old, Antwerp law student at UGent, bon vivant with an angle off, passionate about running, glitter, lipstick, Disney princesses and Nutella, carrier of the BRCA1 gene and since December 19, 2017 proud owner of a pair of new breasts in the making.

Maybe a little history first. My mom has already had to fight breast cancer twice. The first time in 2006, relapsed in 2015. She was then advised to have a genetic test. This showed that she was genetically burdened with the BRCA1 gene. Okay, the BRCA1 gene. What exactly does this mean? About an 85% chance of getting breast cancer and about a 60% chance of getting ovarian cancer. Whew. Way too much so.

There was a 50% chance that she would have passed this on to my sister and myself. So we immediately chose to get tested as well. I was 20 years old at the time.

Together with my sister, I went to the hospital on December 8, 2015 for our test results. I was allowed in first. My test was positive. Lap. "Okay. Now what?" That was my first question. I had decided for myself ahead of time that I would go for a preventive double mastectomy, so I immediately wanted to know what the options were and how it would all work now.

I went back outside, my sister went inside. She came back out weeping. "I haven't got it, ye have, haven't ye?" Yes, indeed. I didn't shed a tear, I took a good hold of her, told her I was glad she didn't have it and then we went to a nice restaurant together. To celebrate that she didn't have it and to celebrate that I did have it but was going to do something about it. Nah.

I've always been very open about my mom's cancer, about the fact that we were going to test, and similarly about my own genetic defect. So my close friends knew about the test and they lived with me towards the test result. So that December ⁸, 2015, I got messages from everyone with "So?", "How was it?". I just told everyone right away. Some were very shocked and I had the impression that at times those around me were having a harder time than myself. I immediately said what I was planning and that they could ask me anything and say anything. I felt it was important to talk about it openly and honestly, both for those around me and for myself. After a while there were even jokes about it and now my breasts are talked about like the weather or dinner. No tension, no taboos. Just plain talk.

Bon, but then, that double mastectomy. I immediately went to the library to rent books on breast reconstruction to inform myself properly. I went to see my mom's plastic surgeon, I looked for information on the Internet,... This was harder than I thought. There is so much information, but at the same time so little. You also read a lot of different things and I also didn't find anyone my own age who had gone through something similar.

After a while, I ended up with Professor Phillip Blondeel at UZ Gent. I had a good feeling there right away. He was going to be the one. We opted for placing expanders and then reconstruction through lipofillings, so that I have breasts with my own tissue as the final result.

On May 16, 2017, one day after my ^21st birthday, we set my surgery date: December 19, 2017. Nice birthday present to myself, not getting sick and a pair of new healthy breasts. Haha. SPANISH!

I immediately created a countdown timer on my cell phone. My grandpa couldn't understand how I could count down so cheerfully to the day my breasts would come off, but I saw it as something positive, as a gift. I know I am genetically taxed, so I get the chance to be one step ahead of breast cancer. My mom didn't know that, she didn't have this choice and she got sick twice. I'm not going to get sick, great right?

Meanwhile, my countdown clock ticked on. A few days before my mastectomy, I went with Lieve Blancquaert to take pictures of my "old" breasts, for inclusion in De Breastkankerbijbel (The Breast Cancer Bible). This is a book she created together with Barbara Debusschere and on which I also collaborated. That photo shoot was fantastic, thank you Dear. It's a nice memento of my old breasts and it helped me to be able to say goodbye to my old body and close it for myself. Now I was completely ready.

Then it was finally here, December 19, 2017. I was very calm that morning. My best friend took me to the hospital, it was a fun car ride. Rocking along loudly with the radio.

My surgery went well and I felt so relieved when I was back in my room. The nurses helped me into my Minnie Mouse pajamas with glitter and my mom painted my nails. For my surgery, my nail polish had to come off and there was no way I was going to be in the hospital without it. #stylish

In the days that followed I received an enormous number of visitors; I was literally and figuratively never alone. I was truly surrounded by a fantastic network. My friends also made sure that my hospital room was the most beautiful in the entire hospital. From an overload of balloons to a cardboard Christmas tree for my nightstand, to a glitter garland for my bedside.

I also received lots of cute gifts, from a personalized glitter box with a unicorn stuffed toy to jars of Nutella. My six best friends had even put together a veritable "Titty Book" with a page with a message and pictures of just about everyone close to me. The greatest gift I ever received. I cried my eyes out.

In addition, I was deluged with sweet messages and cards. Even Natalia had posted a photo of us on Instagram to encourage me. Heartwarming, all this support. Relieved and grateful, that's how I felt.

Meanwhile, we are almost ten months and three surgeries down the road. It was a tough year, combining a mastectomy and reconstruction with a master's degree in law, it's no cat's pee. Haha. I miraculously managed to pass all my exams this academic year, even though I had to recover from my surgeries during my exam periods.

It hasn't been easy and there's still some things ahead of me, but I'm trying to look at it all as positively as possible. December 4, my next surgery is scheduled. In the meantime, I'm doing an internship, writing my thesis and running 10 kilometers again. All good.

Of course I also have a shitty day sometimes, of course it remains what it is. I found it very frustrating that I was not allowed to walk for a while, that I was dependent on others, that I had to be taken care of, that I could not study for my exams the way I wanted to, that I have to see those scars every day in the mirror. But all this outweighs the relief I feel, that those two ticking time bombs that were my breasts are now gone. And it can only get better now, the only way is up!

So, this was my story in a nutshell. For those who like to stay further informed about my boob adventure or for those who like to know everything in detail, I have created a blog "Fake boobs, real smile."

I wanted to do something positive with my genetic load and make a nice story out of it. Therefore, I started a blog where I write about my breast adventures. By sharing my story, I want to make this topic discussable, give other women in my situation a heads up and make something "fun" out of it for myself.

One more thing I would like to say to any woman who is facing breast cancer in one way or another: I have not been sick myself and every story and every woman is different, but you are not less of a woman because you no longer have breasts (for a while) or when they are "in progress." Being a woman is much more than just breasts, you are all beautiful.

Much love,

Davina

Davina wrote this blog article for us in 2018. Today she graduated and is working as an attorney. On September 10, she will have a final lipofilling*. After that, she will have another nipple tattoo.

Lipofilling = a technique in which fat is extracted somewhere - for example, from the abdomen or thigh - and re-injected in another place. After breast reconstruction, lipofilling is used to improve results or reduce pain.