Genetic Mutation Clients

In 2017 I found out that I have a genetic mutation that puts me at a significantly high risk of developing breast cancer. The news was not surprising given that my mother, both of my sisters and several of my aunts all had breast cancer, but receiving confirmation still threw me for a loop.

Suddenly, lab results turned one of my greatest fears into a reality that I could no longer put off as something to think about in the future. From that point on, I knew with certainty that if I did not take some sort of action, I had a greater than 50% chance of being diagnosed with breast cancer.

I was bombarded by a million different emotions. I was scared of breast cancer, I was angry at the reality, and I was bewildered and left wondering “why me? Why couldn’t I just be a normal woman who complains about getting her boobs smooshed at her annual mammogram.” I was terrified of exploring surgical options because the thought of going under anesthesia completely freaked me out. But more than all of those feelings combined, I did not want to put my husband and kids through my getting breast cancer and undergoing cancer treatment. And there was the nagging guilt that it felt wrong not to act on my knowledge and take the opportunity to potentially do something prophylactically to prevent breast cancer because most women do not have this choice.

I was having difficulty wrapping my head around the available options about what to do and how to proceed. Part of me wanted to believe this whole situation would magically disappear. Another part of me wanted to relinquish my free will and have someone else tell me exactly what to do. But I knew myself well enough to know the only way I could move through this situation with confidence was to explore all of my options before any plan of action was put in place. Operation What to Do About My Breasts became my focus.

After consulting with two breast surgeons and two genetic counselors, I opted to increase the number and types of screenings I had each year. I had 3D mammograms twice a year and ultrasounds twice a year This felt proactive and manageable—until it didn’t. One of my sisters and I share the same gene and as I got closer to the age she was when she was diagnosed with breast cancer, I became increasingly anxious. I have faith in my gut and it was telling me that I needed to go back and see the breast surgeon whom I trusted the most. I had a strong feeling she would recommend that I remove my breasts.

As much as I dreaded the appointment, I trusted that she would give it to me straight, which I appreciated. During my visit she told me that my odds of getting breast cancer were 70%. Then she asked me, “Would you get on a plane if you knew that 7 out of 10 times it would crash?” Her unsubtle metaphor drove her point home. I wanted to kick and scream at the statistic she shared with me and I was struggling with how unfair life felt at that moment! And then the guilt struck again—I was being given a choice to do something prophylactically.

I made up my mind to heed the doctor’s advice and have a double-mastectomy. That one big decision that led to so many more. I needed to research and choose a plastic surgeon who I was comfortable with because getting replacement boobs is a big deal. And then I had to choose not just the size of my new breasts, but the method I would use to replace them. There are so many options. Did you know you can have breasts made from your body’s own fat? I didn’t. But to explore those options I had to undress for multiple plastic surgeons which was triggering for me. I felt self-conscious, embarrassed, and unattractive at every consult. Self-criticism was my awful companion on this part of my journey.

Despite the challenge of self-consciousness and self-criticism, I found my group of plastic surgeons and I was confident that I had the right team. All of the doctors I chose had done these surgeries thousands of times, with outstanding outcomes. My plastic surgeon and his team, who handled almost all of my follow up appointments were compassionate and kind. I felt seen and safe with them. Turning the reins over to doctors I trusted allowed me to take a deep breath and prepare for my procedures.

I had many sessions of therapy, spent countless hours reading through Facebook groups dedicated to women in my position, and worked with a healer to tackle my phobia of general anesthesia. I learned how to visualize a positive surgical outcome and how to communicate with my medical team so that they understood my needs.

As I moved through this process I never made any of my decisions lightly. I took my time and thought through what felt best and how I wanted to proceed. Also, I never took for granted the gift of time I was given.

I imagine some women reading this may have recently learned that they have a genetic mutation and are at the beginning of this journey. Others may be exploring the available options and deciding how they want to proceed. I’ve been there and I’ve done it. I understand many of the things you may be feeling, and I can help you navigate through what is often a complicated and emotional experience. I’m the person you want in this particular fox hole with you. I know the options you are exploring can feel overwhelming. I will help you navigate them as well as the feelings that will surely arise. It would be my honor to hold space for you and help you manage this process.