As a young girl, I witnessed my grandmother lose a long battle to ovarian cancer. I saw my 27 year old aunt undergo a radical mastectomy and radiation at a time when she had no options for breast reconstruction. There were many stories after that including another aunt. A 2x survivor who endured ovarian cancer and also breast cancer. Not to mention a 36 year old cousin. Also diagnosed with breast cancer, resulting in a double mastectomy. All of these women in my family had cancer, and there were many more before them. I grew up with cancer being a household word and it became the norm. It was just a matter of who was next.

Needless to say, I have a strong family history of breast and ovarian cancer. Growing up I cared for many women in my family dealing with breast cancer and the visions and memories of what my they endured, never left me.  In 1999 at the age of 29 I was at the forefront of genetic testing, and tested positive for the BRCA1 genetic mutation. I was informed that I had up to an 87% lifetime risk of developing breast cancer and a 60% chance of developing ovarian cancer.

My partner who I was newly married to was with me when I received the genetic test results. You think you are prepared to hear the news but who is really ever prepared to hear they have cancer or a high risk to get cancer? Nothing can prepare you for that moment. I’ll never forget sitting in the doctor’s office, and feeling my world collapse around me. When the genetic counselor asked me if I had ever considered a prophylactic mastectomy, I went silent. That was not something I was ready to consider.

For over the next decade, I took part in a research study program at Memorial Sloane Kettering that involved diligent surveillance screening every few months. Throughout this time, I was silently struggling with what might be happening in my body. Always worrying. For years after, I felt like I lived “in-hiding”. Ashamed of the stigma of having a genetic mutation. I was living in a lonely world as a young working woman in NYC and was running in and out of medical appointments. Mammograms, ultrasounds, blood tests and numerous needle biopsies after suspicious screenings. I was terrified about getting the results.  Each time I went through the process, it was high anxiety. This was not something my friends at this age could relate to and I never told anyone. I couldn’t tell my co-workers and I was afraid of my employer ever finding out I had this predisposition to cancer in fear of losing my job. This was also at a time when insurance could drop you for a pre-existing condition no less. I remember confiding in my gyn that I had the mutation and I was told never to let anyone document my genetic status in my medical file because it would then be considered a pre-existing condition and I could potentially be dropped by my insurance. It was a terrible feeling to live in hiding.

Fast forward several years and 2 pregnancies later. Time was marching on and every time I put my 2 little girls, a newborn and a 4 year- old to bed at night, it became more clear to me that it was time to take further steps to lower my cancer risk. Every year that went by my risk increased with age. I needed to do everything in my power to be here as their mom. It was my job and the needed me.

While I felt empowered at the thought of taking charge of my health with elective surgeries, I was also afraid. What would happen to my sexuality? How would I look? How would I feel? How would I ever recover while trying to raise children? What would I tell my job? How would my children react and what would my family think. My mind was racing. I remember being scared to point of feeling anxious and waking up in the middle of the night just thinking about it.  Nobody in my family had ever done this proactively.  I relied on and the breast cancer community for support.

In 2011, I underwent prophylactic oophorectomies, meaning I took my ovaries out electively. I went into immediate surgical menopause at age 41, not having any hormones. My hair was falling out, I gained 30 pounds out of nowhere and I aged 10 years in 10 minutes. These are the things people don’t tell you. I felt terrible. At the same time, I was mentally preparing myself to take the next drastic measure to remove my breasts.

It Was Difficult Making Decisions

It was very important to me to look and feel as natural as possible.  After seeing so many women in my family diagnosed with breast cancer with either implant reconstruction or no reconstruction, I knew I wanted something different.

A year ½ later and after 12 years of breast surveillance, and after consulting with many different surgeons and considering all of the options, I decided to proceed with a prophylactic nipple sparring double mastectomy with DIEP flap reconstruction, using my own belly fat and tissue.

It happened to have been the week before Angelina Jolie announced her preventative double mastectomy that made world news.

My Recovery

I underwent DIEP flap surgery at a time when it wasn’t as widely performed. It was a scary 13 hour operation and 5 day hospital stay (which has now improved dramatically) As a full-time working mother with two young children at home, I was concerned about hard and long recovery. I knew I had to get back to my family and work life as quickly as possible.

I was proactive and did everything possible to educate myself about surgery ahead of time and researched ways I could optimize my recovery. I drew upon the knowledge of former patients and the breast cancer community on what to expect and how to best prepare. I also educated myself about holistic healing modalities such as meditation, deep breathing, and guided imagery. I also started journaling. By the time I had surgery, I felt very well prepared.

My journey was a transformative experience. While it was a difficult to electively have my breasts removed, I took control of my health and embraced my decision with a positive mindset. And despite my setbacks, I emerged from my surgery “feeling whole again” with the breast reconstruction option that was right for me. Unexpectedly, I also realized that I had found a new purpose in life.

I Turned My Journey Into a Positive Life-Changing Experience

Having seen the suffering and devastating impact of breast cancer on my family members, I did not want my daughters to see that happen to me. My daughter’s have a 50% chance of inheriting the same mutation and face the same difficult decisions on how to manage their risk. I want to make sure that I set an example for them. Despite my struggles and set-backs, this experience has empowered me to help others dealing with breast cancer or the face the risk of breast cancer. So much so, that helping these women has now become my life’s work.

I began volunteering in the breast cancer community over a decade ago and found that with compassion, sensitivity and commitment I was able to help hundreds of women through the challenges of breast cancer treatment and recovery. My experiences and deep understanding of what women go through enable me to identify the unique needs of each patient. I am now at the heart of the Friedman Center for Breast and Lymphatic Surgery at Northwell Health where I support a team of plastic surgeons who focus on state- of- the art breast cancer reconstruction. I play a pivotal role in helping to create a positive experience for every patient and am responsible for program development, patient education and empowerment, public event planning, fundraising and serve as a liaison with physicians, support groups and other breast cancer related programs.

I routinely speak with patients about what they are going through and will often connect a patient with another woman who has gone through a similar course of treatment, while empowering patients to make informed decisions alongside their physicians about their breast reconstruction options in a warm and nurturing environment. We help women not just on the clinical side, but on the emotional side as well.

I also give back to others in the community and spend much of my personal time on humanitarian and philanthropic efforts for the community. I’ve continued my volunteerism since 2012 with an organization called FORCE (Facing Our Risk Empowered), engage in BRA Day events, and advocate for organizations such as AIRS.

These volunteer efforts to help other women, in many ways have also played a role in the emotional healing of my own journey.

My Life After Breast Reconstruction Has Been Good

I have no regrets about my decision to have a preventative double mastectomy with DIEP Flap breast reconstruction (using my belly fat and tissue to reconstruct my breasts). I now have peace of mind knowing that I took a pro-active approach to significantly lowering my risk of contracting breast cancer in my life time. Having come from a family infiltrated with breast cancer, I know all too well that going through breast cancer and breast reconstruction is a challenging experience. But, I am here to tell you there are many positive stories out there, including my own.

Women who are considering breast reconstruction after mastectomy usually have one concern at the forefront of their minds: How “real” will my reconstructed breasts look?

Put simply, you cannot expect a reconstructed breast to ever feel or look exactly like your own natural breast, but it can come pretty close.

I often share with women who are facing breast reconstruction, you will develop a “new normal” and a new sense of you. It just takes time. In fact, sometimes the breast reconstruction process can take longer than cancer treatment. Sometimes we may even encounter a set-back in the process and temporarily lose our way.

Regardless of the type of reconstruction we choose, we eventually adjust to the look and feel of our new breasts. We become accustomed to our new shape and size, or even a new profile. It’s an adjustment that takes some getting used to. It took me about a year to feel reconnected with my body. The emotional healing takes even longer.

My Mastectomy and Reconstruction Made Me Stronger

I was afraid of the psychological impact of losing my breasts and wondered if I would still feel like a woman. I wondered how I would ever dress with confidence knowing I lost my natural breasts. I wondered how this would not only change the way I looked physically, but also how I would feel about myself, as a woman and as an individual. Now 9 years later after DIEP Flap reconstruction, the physical scars have faded and I am long comfortable in my skin. I know I made the right decision for me and my family.

I am still shocked at times when I look in the mirror. Shocked that my incredibly skilled plastic surgeon was able to achieve something fantastic that far exceeded my expectations. My rebuilt chest resembles my natural breasts. My profile is restored and my scars have become less noticeable over time. My breasts feel natural and soft to the touch.  Loss of sensation is an unfortunate part of mastectomy. It’s is big part of emotional healing and accepting the “new” me.

My newly reconstructed breasts have become part of me, part of who I am and part of my being. I became a whole woman again.

It was hard to say good bye to my breasts, however, I am happy with the outcome.  I came through to the other side feeling strong and beautiful. I can look in the mirror with confidence. I’ve long since returned to a sense of normalcy and feel just as feminine as I did before, but now with a newfound sense of freedom. Every woman facing a cancer diagnosis or high risk deserves to feel the same.

The experience will never be forgotten but I no longer wake up thinking about it. In fact, the thought of my mastectomies is now in the distant past and I’ve gone on to live a very happy and active life.

For those of us who either opt to have mastectomies as a preventive measure, or have mastectomies as a life-saving measure, breast reconstruction is an important part of the decision making for the preservation of our female beauty, confidence, and ultimately individual happiness.  In truth, I will never be the same. I see myself different now when I look in the mirror, because I am different, inside as well as outside.

But, at least I am here, stronger and wiser for the experience. I have dedicated my life to women and I’m here to raise my children. There are incredible joys in the silver lining after my mastectomy and reconstruction.

Thank you for reading my story. And thank you to AIRS and to the many plastic surgeons for all of the tireless work they do to help women feel whole again.

Janet Gerlach