My mother was a lot of things- deeply caring, independent, fiercely loyal, inspirational, hilarious, and the best person I’ve ever known. At 15 years old, my world turned upside down when she was diagnosed with BRCA1 positive associated advanced ovarian cancer. Three years of fierce fighting later, she passed away. Just three years after we lost her, at 21 years old it was my turn to choose to be tested for the BRCA1 gene mutation, which came with a significantly elevated risk of breast and ovarian cancer. I was told I had a 50/50 chance of inheriting it.
The first emotion I identified with was fear. Fear of being sick and dying of course, but also fear of losing control of my life. I was afraid that by being handed a positive result I would be guaranteeing myself a life of looking over my shoulder, waiting for the moment I’m handed a cancer diagnosis. How will I learn to live in the moment with thoughts of losing my reproductive organs, chemotherapy, infertility, and illness floating through my mind? If I want children, do I have to get married by a certain age? Will I be living my entire life based on a countdown to inevitable diagnosis or preventative surgery?
My fears made me feel powerless at first. I thought getting genetically tested would make me feel like I had no control. I still remember lying on the floor of my kitchen the night I got the call from my genetic counselor that I was positive in late 2014, not knowing what my future would look like. I couldn’t process it all at the time, and put it to the back of my mind- I told myself that I was young, and I had time to think about it. I met with my genetic oncologist, who didn’t recommend I start screening for a few years, and so I continued on with my life.
A few years after my testing results returned, I started work as a Physician Assistant in the Emergency Department at a Boston hospital that is very closely affiliated with a major cancer institute. I started providing emergency care to oncology patients regularly, some of the loveliest and strongest patients I’ve ever met, many of whom were fighting breast and ovarian cancer. I felt privileged to be able to take care of these patients, but I also felt as if my job was forcing me to acknowledge the risk I knew I had, and started to think about what my future plan was going to be. I also was able to meet other women going through similar things as me through the non-profit The Breasties. I met young women who had gotten preventative surgeries, currently in treatment for cancer, living with metastatic cancer and that had lost loved ones to cancer. I learned so much from these women who have walked this path before me. To this day I am so grateful for their friendship and presence in my life. After months and years of reflection, I began to realize that choosing to be tested gave me power- the power to make my own decisions when it came to my health and my life. I stopped trying to run from my diagnosis and started to acknowledge and process my emotions.
Allowing myself to stand in my fear has taught me that fear is knowledge of a risk, but that knowledge can be turned into power. Because I know I’m BRCA1 positive, I have the ability to take action and reduce my risk on my own terms. My timeline will be determined by me, and me alone. In 2018 I began regular screening for breast cancer- I met with my genetic oncologist again and had my first breast MRI. I spent a day at the cancer center getting testing and waited a harrowing week for the results (they were negative). That was the week I decided to move forward with prophylactic surgery. I was determined to take control, and for the first time in a long time I truly felt I was ready.
The first breast surgeon I met with regarding preventative surgery was surprisingly discouraging- she voiced her concern that I would not be able to “live a normal life” without my breasts. It was days after that appointment until I realized that although that may be her opinion, it doesn’t have to be mine, and it frankly wasn’t mine. I define what is “normal” to me, and what is important to me in my life- and that is my ability to live a long healthy life with the people that I love, doing the things that I love. It is a life without breast cancer. I decided that I would not let my self worth or identity be defined by the presence or absence of natural breasts. I decided that yes it would be nice to breastfeed my future children if I am lucky enough to have them, but it is more important to me that they don’t lose me to cancer. And I thought about the person my mother was- I know that if she had the knowledge that I am privileged to have, she would have done anything she could have to save her own life. I found a new breast surgeon, one that not only impressed me clinically, but told me that she trusted my decision and that I understood the risks and consequences, and that it is my body and my choice.
And so in November 2019 just short of 26 years old I chose to undergo a risk-reducing bilateral prophylactic double mastectomy. It was not an easy road by any means- there were unexpected complications, and the journey to recovery continues. But I knew the moment I got home from the hospital that I had undoubtedly made the right decision. In retrospect, I’m so glad I didn’t rush myself into a decision immediately after testing- I needed those four years of self reflection to figure out what was going to be right for me. It’s not to say that risk-reducing surgery is the right decision for everyone- it’s not a decision to be made lightly, and every woman has the right and the power to decide what is right for her. It’s also not to say that I have outgrown my fears- I still become overwhelmed by the thought of my ovarian cancer risk, a journey that I have barely begun. But I know that moving forward I can trust myself to make the right decisions for me. I know that I do live a fulfilling and happy life, and I have every intention of making it a long one. I know that I’m not looking over my shoulder waiting for a diagnosis- I’m only looking forward.
By Ari Rossetti
It was my first emergency room visit just weeks after a double mastectomy direct-to-implant, when I realized that my intuition would be the very thing that saved my life. Angry that I was even in this position to begin with, I was especially irritated by the fact that I had to repeat myself eight times for the eight interns that visited, and all asked the stock questions.
I am an anomaly. I do not fall in line with the classic statistics or symptoms as a patient. Sitting in front of these strangers proved that point over and over. “No, I don’t get fevers when I’m sick or have an infection…ever,” I repeated. Still pretty fresh from surgery with nerve damage, I had very little feeling in my chest, especially at the incision site which now resembled more of a transition to becoming a zombie than a woman trying to save herself from the effects of a BRCA1 mutation. Because of that, pain was a non-issue.
After sitting in the ER for four hours, retelling my case to eight interns, and never receiving the consult with a plastic surgeon I requested, I had the gut feeling I was in for a long haul. My plastic surgeon was out of town at a conference, and it turns out, he was at the same conference as the plastic surgeon from this hospital. There was no qualified provider left as my back-up in case of emergency…the very emergency I was living. So, I was discharged with the wrong antibiotic because no tests were run, no cultures were taken, and no blood was drawn. And heck, I didn’t have a fever, so there was that. That visit would set the tone for what was about to unravel over the next several months.
A week passed and my surgeon was still MIA, so I visited my PCP concerned that I was literally coming apart at the seams. Again, not seeming too concerned, because after all, I had no fever, nausea or vomiting, the PA decided to swab some samples after my continued prompting, even though she really was not concerned. Four days later, my intuition proved right – I had an infection. Even more so, the antibiotic from the ER was not the right one to fight it because it was discovered that I had Pseudomonas, an antibiotic-resistant bacterium that I contracted from unsterile conditions in the hospital. It literally said that in my chart.
Imagine if my PA had not done the necessary swab? That kind of bacteria is the very kind that kills people. I followed the protocol religiously, and yet, the appearance of my breast was not improving. Rather than call my surgeon who was now back in town, my husband was adamant that we show up when his office opened first-thing in the morning, and demand to be seen. So, we did just that. My husband drove us 1.5 hours and we were first in line. Even after explaining what had transpired the weeks prior, my surgeon brushed me off, asking how I could be confident something was wrong. “Look for yourself.” And he did, with mouth wide open. No words, he feverishly took multiple samples and promptly inserted me in his surgical schedule the next day for implant removal, debriding of the wound, and new implants. My intuition had served me well once again.
The surgery went well, and my highly-regarded, award-winning surgeon did not feel I needed to be placed on antibiotics since I just finished a round for my Pseudomonas diagnosis. So, I was sent on my merry way. Again, the story replayed itself. My surgeon was out of town, no back-up provider to contact, and my incision was now becoming a hole in the side of my breast. No fever. No nausea. No vomiting. But I knew things weren’t right when I looked in that hole and saw black material. Multiple calls to the office nurse who then made multiple unanswered calls to surgeon. Calls to new plastic surgeons in the health system, calendars cleared, and another emergency surgery was in store for me. Turned out the Pseudomonas had never cleared the first time and was setting up camp in my chest cavity.
My health journey did not end after that implant removal and replacement. Today, after seven total surgeries on my chest, I am left with deformed and scarred breast tissue. Open wounds unhealed after implant removals left my new surgeon no choice but to close my chest with whatever was left. What began as an informed and highly researched decision to have BRCA1 surgery to help beat my odds of dying from cancer, nearly killed me because of poor care. It was my intuition and advocating for my health and my life that saved me.
So many women are raised to listen, be “good” and follow directions. Somewhere along the lines, many of these very women lose their voice. For some, that can be in their relationships, in their jobs, or in their journey to health and wellness. I am thankful that I was raised differently. Coming from a line of women with auto-immune diseases, and a long lineage of cancer survivors and those who have lost their battle with cancer, I learned very quickly that I must advocate for myself, or no one will. I took note early on that as women, we have the gift of intuition. We are connected to our bodies in a unique and sometimes mysterious way, that provides an insight unexplained by science and medicine.
I did all the right things before my BRCA1 surgery. I researched. I spoke with several physicians and surgeons. I consulted genetics counselors and leaned on friends who had undergone the same surgery. I chose and trusted a highly credentialed and highly regarded surgeon. In the end, none of that mattered. Not one ounce of that pre-surgery work is what saved my life. My voice, my trust in myself and my intuition saved my life. My need to be heard was far more vital to my well-being than my need to be seen as a compliant or “good” patient.
The greatest lesson learned from this continued journey to health? Women must serve as their own advocate. We must speak up for ourselves and not be easily disregarded by providers who think their credentials mean they are free from error. We must continue to be our biggest proponent, unwilling to be silenced when we know in our gut that something is wrong. We must remember that intuition is our greatest superpower.
About the author
Amy Neuman Proffitt is a proud wife, mother and stepmother to six, marketing professional, blogger, motivational speaker and BRCA1 previvor. She continues to share her knowledge and experience of her health journey to help other women feel empowered to own their health and wellness and become the best version of themselves. Amy created The HERo, a community of confident and empowered females who are their own HERo. This community continues to grow through in-person events and training for women of all ages, and online through social media platforms.
It’s funny how time changes everything. I woke up this morning like every other day. I sent my husband off to work, brewed a cup of coffee and started strategically planning how to procrastinate writing my Masters thesis. Yep, just like any other day. And like most days, I logged on to Facebook to see what was happening in the world. Facebook has made a lot of changes over the years, but there’s one particular update that I’ve always loved – the “On This Day” feature. This add-on displays all of your posts, old photos, or tags on your timeline from the current date, going back as long as you’ve had your profile. I’m a sentimental gal and really enjoy having that daily look back.
Today, however, I was reminded of a very special occasion – the 2nd anniversary of my preventive double mastectomy. I frantically checked the date of the post, looked at my calendar and realized – yep, I had forgotten.
I didn’t know how to feel. I imagine it could be compared to a husband bringing a bouquet of flowers home and the wife having no idea that it was their wedding anniversary. It didn’t feel right – I felt like I was in the twilight zone. But then I started to smile. I had forgotten my mastectomy for the very reason that I had had the surgery for in the first place – not letting cancer define my life.
Two years ago today, at the age of 26, I woke up in Georgetown University Hospital. I had undergone a preventive double mastectomy after losing my mother, grandmother and great aunt to breast cancer. This was a decision that I didn’t take lightly, but also didn’t take too seriously – if that makes sense? I’m a pretty practical person. When faced with a problem, I know you simply have to choose a solution and move on. There’s no sense in dwelling on your answer. This was how I faced my mastectomy. These are my risks and here is my solution. I didn’t overthink it, I didn’t agonize over it, I didn’t mourn the change of my body – I just did it.
Since March 9, 2015, I underwent 3 reconstructive surgeries, moved to a foreign country, learned (or attempted to learn) a new language, got engaged, bought a house, got married, traveled across the globe and started graduate school. But these are the ‘big’ things. I didn’t forget my surgery because of ‘grad school’. I forgot because, in the time since my surgery, I learned how much water you’re supposed to give to an orchid, I taught myself calligraphy, I almost “caught em’ all” in PokemonGo, I learned how to make a Bolognese, I figured out how to get Girl Scout cookies through customs, I made friends and I simply lived my life…
My mother passed away in 2004, leaving her diaries to me. In which, she chronicled facing breast cancer twice. At the time of her first diagnosis, she was in her late 20s and was a champion marathon runner, continuing even while undergoing treatment.
Running seemed to calm her, helping her find focus. One particular line always stuck with me:
“With each stride, I repeated to myself: ‘Left – Right – Left – Right – Don’t Die, Don’t Die’.”
I felt a twinge of guilt this morning because my day started “Left – Right – Left – Right – it’s a Thursday.” But I realized that it’s because I’ve been given the gift of peace of mind – the gift of not having to remember. And for that, I am incredibly blessed.
So, today, March 9, 2017, instead of my surgery, I choose to remember my mother, who not only gave me life, but whose unwavering perseverance in the face of adversity afforded me the courage to prolong it. I’m living proof that time heals all wounds, quite literally and figuratively.
I would be remiss not to also acknowledge the support of my husband, family and friends. They’ve filled the last two years with happiness and hope. I love you all. Here’s to forgetting mastectomies, forgetting cancer and most importantly – forgetting fear.
