In May of 2013, Angelina Jolie wrote an op-ed piece for the New York Times entitled “My Medical Choice.” The collective public reaction was mostly one of shock, but also one of confusion. You see, most people have never heard of a BRCA mutation, so they can’t possibly understand why someone (no less, Angelina Jolie!) would chose to remove her healthy breasts. I, on the other hand, was grateful for her courage.
I also have a BRCA mutation-BRCA2 to be exact, and I chose to remove my healthy breasts (and ovaries) almost eight years ago. My story began in September 2008 when my father, (yes, my father) called to let me know that he had the BRCA2 mutation and that I had a 50% chance of inheriting it as well. A BRCA gene is a tumor suppressor gene, and when that gene is mutated, it doesn’t work properly-and puts you at much higher risks for certain types of cancer. Breast and ovarian cancer present the highest risks, but carriers are also at a slightly higher risk for pancreatic cancer, melanoma and prostate cancer (in men).
After meeting with a genetic counsellor, I went for genetic testing. In December 2008 I found out that I did in fact inherit the mutation, giving me an 87% lifetime risk of developing breast cancer, along with a 40% chance of developing ovarian cancer.
The term “petrified” doesn’t do justice to describe the way I felt upon receiving the news. From the second I learned of my risk factors, I felt like a ticking time bomb. Every ache in my breast and every twitch in my stomach felt like cancer.
For many people, I can imagine choosing to have risk-reducing surgeries being a difficult decision. For me however, it was a no-brainer. I felt that it was the lesser of two evils, as there was no way I could live my life in constant fear. I felt that it wasn’t a matter of “if” I was going to get cancer, but “when.” While there’s no “right way” to deal with a hereditary mutation, I did what was right for myself and my family. Upon making my decision, I began searching online for information, but there was little to none available. I quickly learned that while everyone had an opinion about my decision, nobody could actually seem to relate.
My husband and friends were amazingly supportive, but they weren’t living my fears. I needed to talk with others who were living through the same difficult decisions while feeling paralyzed with fear. I wanted to connect with other women who were faced with removing healthy body parts.
While waiting anxiously for my surgery, I continued searching online for others to talk to. Eventually, my searching paid off, as I found a handful of women who were faced with the same decisions. These women were also BRCA positive and contemplating prophylactic surgeries. Having them to talk was exactly what I needed. These women were able to understand exactly what I was feeling, as well as the emotional rollercoaster that I was on. I mean… removing healthy body parts isn’t exactly my idea of a good time.
I was very concerned about how I’d look and feel afterward. I really wanted to see pictures of women who’d chosen prophylactic surgeries, but had no point of reference. After searching for what felt like forever, I finally found one. One-that’s it. A single image of a woman with breast reconstruction, and it was due to cancer.
I must have looked at that picture a thousand times. I shared it with my BRCA friends and discussed how more resources for women like us were needed. A peer support group was desperately needed, where we could connect, share our feelings and emotions, and not worry about being judged (which I have to say unfortunately happens to a lot of us). With that, a seed was planted. But more on that shortly…
I was paralyzed with fear about the actual surgery. I have since realized that one of the hardest parts for me was the buildup to my surgery date. The countdown can drive you crazy. I never once questioned my decision but was very much afraid of the actual surgery, as well as the recovery. So many questions swirled around in my head.
How painful would it be? How should I prepare? Would I be able to take care of my kids afterward? How would I look and feel? How would others see me? And even questions like, will I be able to go to the bathroom on my own?
It was during that time that Teri (one of my BRCA friends) and I decided to start a private Facebook group. It really helped to keep my mind busy during those last few weeks prior to surgery. When the big day finally arrived, I felt a sense of calm come over my body. I was doing this to live a long and healthy life, I told myself. And so I got through it.
Recovery was REALLY tough. Not having cancer and removing my breasts was difficult for people to understand. When I got home I immediately went online to update my BRCA girls about my surgery, which reaffirmed how important peer support is when going through trying times. During the next six months, I started reaching out to find other women dealing with BRCA mutations. I reached out to my local hospitals in my home town of Montreal and became the first point of contact for those who wanted to talk with someone who’d been in their shoes.
By word of mouth, the group began to grow. During this time, I started to suffer complications from my own surgery and had to go back under the knife to deal with them. The second surgery wasn’t a success and over the course of the next two years I suffered more complications, which led to an additional four surgeries. This was not only physically exhausting, but emotionally draining. Thankfully, I found a new surgeon who was able to start over and correct most of my issues. I’ve since been surgery-free.
After this experience, I was fortunate enough to be granted a scholarship to a hereditary cancer symposium in Florida, run by an organization called F.O.R.C.E., where I met hundreds of women dealing with hereditary genetic mutations. Upon my return home, I was more driven than ever to make our group known to genetic counsellors, doctors, plastic surgeons and organizations dealing with breast and ovarian cancer, as well as other hereditary cancers such as pancreatic cancer, skin cancer, uterine cancer, colon cancer, prostate cancer and male breast cancer.
Today, my BRCA sisterhood support group has over 7,000 members worldwide and is growing daily. It’s become well known and is highly respected by geneticists and doctors throughout the world. Our group is now used regularly as a resource for women dealing with genetic mutations.
As for myself, I’ve had a long journey. Because there’s a chance of developing breast cancer in the milk ducts, I also chose not to keep my nipples-I now have a large incision line across both sides of my chest. I never hated the scars, but they don’t look very pretty-I knew that I wanted to do something to cover them up.
With all my complications I had no desire to have more surgery to recreate nipples. In July 2015, I decided to share what I hope will the last step in my personal journey. I turned my mastectomy into a work of art and defined beauty on my own terms. I chose to have a beautiful floral tattoo created on my left breast to cover my incision lines. It took ten long and painful hours but it was so incredibly worth it. I love it and it really transforms the way I see myself. I chose to keep my right side scarred because I like to see both where I’ve been and where I am today. My scars tell a story that I’m very proud of!
So many women that I’ve spoken with feel ugly and scarred post-mastectomy-I truly hope my story can help change that. Society often paints an unrealistic picture of what beauty should be defined as. There are so many ways that women can feel beautiful again after a mastectomy. Many women I speak with don’t even know that tattooing is an option for them. Many know about nipple tattooing but not artistic tattooing.
I’ve received calls and emails from all over the world, and have been interviewed locally, as well as internationally. I was even fortunate enough to be featured in a Buzzfeed video that’s garnered 2.5 million views and counting. This October I’m proud to be partnering with P.Ink to bring an amazing initiative to Montreal. P.ink provides free mastectomy tattoos to breast cancer survivors, as well as BRCA mutation pre-vivors.
Support comes in many forms – emotional, physical, through connections, bonds, and similar experiences and stories that link us. Everyone goes through difficult times but no one needs to go through them alone. There are resources available to you for whatever it is you might be going through-even if it takes a little digging. And if you can’t find what it is you’re looking for, sometimes it’s up to you to create the community that you so deeply desire and deserve.
“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.” – Socrates
Much love, Karen
PS – Here’s the link to Angelina Jolie’s follow-up piece for the New York Times in March of 2015, entitled “Angelina Jolie Pitt: Diary of a Surgery.”
Karen Malkin-Lazarovitz Contact Info:
Personal Website: Beauty on My Terms
Facebook: Karen Malkin-Lazarovitz
Email: [email protected]