Dear Previvors,

Cancer is not going to wait for you to start your new health regimen. Cancer does not care if you just started a new job or are newly married. Cancer is not going to wait for you to have children. Cancer did not care that I was taking preventative measures and was proactively removing my breasts. It did not wait for me to find a convenient time and sadly, it’s not going to pay you a special courtesy.

I wish I had treated my positive BRCA1 test results like a cancer diagnosis. Instead, I waited too long for the ‘right’ time to take preventative measures and put myself at risk. Shortly after my 30th birthday, and just a day before my scheduled prophylactic (preventative) mastectomy, I was diagnosed with stage 3, triple negative breast cancer.

In my early twenties, I underwent genetic testing due to a significant family history of breast cancer. Testing revealed that I am a BRCA1 carrier. At that time, I was not ready for this news; I had just graduated university, was preparing to move abroad to begin my career and was not ready to think about the serious implications of this test. I promised myself then that as soon as I was secure enough in my career and had children of my own I would arrange to have a preventative surgery.

Shortly after receiving the results of genetic testing, I met with genetic counselors to discuss plans for future. I was given very high odds at developing breast cancer however preventative measures were not recommended to me at this time. Due to my age, I was unable to have mammograms and instead received annual MRI scans (a safer alternative). I thought that I was doing everything I should at the time and felt safe.

My mother was 41 years old when she was diagnosed with stage 2 breast cancer and my grandmother was 39. Due to the fact that breast cancer tends to develop earlier in later generations, as I approached the age of 30, I began to prepare myself mentally for a bilateral prophylactic mastectomy. In the fall of 2019, I met with two surgeons who would work alongside each other to remove and reconstruct my breasts. We scheduled my procedure for three months from that date and I began to prepare for this life-altering surgery.

 

Two weeks prior to my scheduled mastectomy, I discovered a lump, the size of a golf ball, in my left breast and had to endure six excruciating biopsies. This procedure took over an hour to complete and involved a doctor chasing solid masses within a cyst in my breast. This was the most invasive, horrific experience I have had to date. Just a day before my double mastectomy my surgeon called me to inform me that the biopsy results were positive for cancer cells.

When I received my diagnose I was in absolute shock. I felt like a ticking time bomb, living in fear that I would one day develop cancer and I had worked so hard to build up the courage to have an elective surgery. It felt like a cruel joke. I cannot begin to explain the frustration and regret that I felt and continue to feel. I had years to complete this surgery and did not act.

Since my bilateral mastectomy I have not had a moment to breathe. About a week after surgery, my boyfriend and I were rushed into family planning and fertility preservation as chemotherapy can cause infertility. I struggled to walk into the fertility clinic as I was still healing. I knew little about IVF so these procedures were overwhelming to me. My boyfriend was responsible for delivering 30 injections to me, each progressively causing me more discomfort as my ovaries grew. Days following my egg retrieval, I began chemotherapy and will soon receive radiation.

Each stage of this journey has been emotionally and physically challenging.
I didn’t have time to process my cancer diagnosis as my surgery was the following day. Following my surgery, I remember all I wanted was wanting to cry and scream and let out my emotions but I couldn’t because it would physically cause my too much pain. I felt trapped inside my own body and hated myself for not taking action sooner. I went from feeling empowered and optimist about my preventative surgery to feeling like a helpless victim. I grieve the loss of my breast, loss of sensation, and the ability to breastfeed every single day. I also fear that I may no longer have the opportunity to be a mother as IVF will have its own challenges in the future. I am terrified that treatment may result in secondary cancers or that cancer will return. These uncertainties weigh heavily on me.

If you are a BRCA carrier or someone with a high risk of developing breast cancer I can confidently say that you will never be ‘ready’ and no time will ever feel ‘prefect’ to undergo preventative measures. Nothing could have prepared me for a double mastectomy and I wish I knew that sooner. Waiting could be the difference between life and death. I strong urge you to undergo preventative measures (i.e. surgery) as soon as possible. A bilateral mastectomy is stressful and challenging enough without having to undergo fertility preservation and treatment as well. Take action and control before cancer does.

If you are found to be at high risk I want you to reframe how you perceive this diagnosis. Instead of asking yourself “Why me?” or thinking “ This is not fair!”, I want you to say, “I am thankful I know now.” If you are fortunate enough to receive a warning, act on it because some women may never know they are at high risk and others worse. I am grateful to have had the opportunity to prepare for my double mastectomy. I had time to say farewell and throw a ‘boob-voyage’ with my friends’ support, I had the chance to preserve a part of myself during a boudoir session, and I had the opportunity to educate myself and take my time in finding a surgeon I trusted. Since I took action, I had more control over loosing my breasts and this had mental health benefits.

Surgery will not be easy. Being a previvor means you will be tested emotionally and physically but having control will ease the process. Being a previvor means you do not have to rush fertility or compromise it. Being a previvor means you do not have to expose yourself to toxic treatments and put yourself at risk for secondary cancers. Being a previvor means your have a network of women at your access for support both in-person and online. I strongly urge you to take action while you can still be a previvor.

By Carmela Fuca

I became a Previvor on January 24th, 2020 when I underwent a prophylactic double mastectomy. I made the decision to have this surgery in order to significantly reduce my chance of getting breast cancer. My Previvor journey started in 2014 when my life as I knew it changed forever. Just two months after my wedding my Mother was diagnosed with ovarian cancer at only 53 years old. My life was turned upside down and shattered. My Mom was my best friend and we were extremely close so I was devastated when I received the news. She begun her fight with ovarian cancer by having surgery to remove the tumor which was wrapped around one of her ovaries and the ovaries themselves. After she healed from the surgery she then started chemotherapy to make sure they got rid of any traces left of the cancer. It was the hardest things I’ve ever gone through. Seeing her in the hospital recovering from a major surgery with tubes, i.vs and stitches, to then be sitting next to her in the infusion center where she would sit for sometimes 8 hours getting injected with chemo. It was devastating and I felt so helpless. Shortly after my Mom’s battle begun her doctors revealed that the cause of her ovarian cancer likely was due to a BRCA gene mutation. At the time nobody in our family had a clue what this meant. The doctors explained to us that one of my Mom’s genes was mutated and that mutation increases the risk of her to get ovarian or breast cancer. They told us that I could also have this gene if I was passed it on to me by my Mom. My Mom’s doctors urged that I get genetic testing to find out if I have the gene or not so I can be properly monitored. I went ahead with the genetic tests and was told I was positive for the BRCA2 Gene mutation in 2015 at the age of 28. I still had little idea what this actually meant and hadn’t fully grasped the importance of knowing this information.

My Mom and Dad urged me to get all the recommended semi annual checkups, tests and procedures. At that time I brushed it off and kept thinking “I’m not sick, nothing is wrong with me yet, I’m still young, why do I need to worry?” But my Mom persisted so her doctors started scheduling routine mammograms, breast MRI’s, ultrasounds and CA125 blood work to try to detect any potential threat in my ovaries or my breasts. My doctors suggested that with my BRCA2 diagnosis I should have my breasts, ovaries and fallopian tubes removed eventually after I was finished having children so I could significantly reduce the possibility of getting cancer. For four years while my Mom continued to battle, I did what the doctors suggested and got routine mammograms, breast MRI’s, ultrasounds and CA125 blood tests. The ultrasounds aren’t fun unless you’re having a baby, the mammograms hurt, and the breast MRI’s for me are the worst! I also live over three hours away from the hospital where I was being seen which meant lots of long trips back and forth for all these screenings. The anxiety of getting the results back from all these tests and procedures was horrible. Every time I had a mammogram they called me back in because they “saw something they wanted to get additional images of.” This literally made my my mind go to all the worst places of what it could be and I dreaded the thought of having to tell my Dad they found something. Fortunately the second round of images always came back negative. After keeping up with these checkups and tests for four years, I knew I didn’t want to have to go through this for the rest of my life. After watching the pain and suffering my Mom went through with years of chemotherapy, surgeries and hospital stays solidified my decision to have the preventative surgeries done. In my mind it’s not an “if” I get diagnosed with cancer, it’s a “when”.

My Mother supported and urged me to get the surgeries done and was thankful the doctors at U.C.S.F were able to discover this information so that it could benefit my health in the future. She was so thankful we found out about the BRCA gene mutation early enough for me to have time to do something about it because she didn’t have that chance.  My Mom had a hysterectomy in 2004 and the doctor decided to leave her ovaries in because she was still fairly young at the time. Ten years later she was diagnosed with ovarian cancer. If she would have been tested in 2004 for the BRCA gene mutation and tested positive, they most certainly would have taken her ovaries. My Mother passed away on November 30th, 2018, and shortly after my husband and I decided that it would be best for me to get the preventative surgeries done as soon as possible. We didn’t want to live the rest of our lives with this fear and constant anxiety. Since we had come to the conclusion that we didn’t want to have children, we figured I didn’t need my breasts or ovaries anyway. In early 2019 I met with my surgeons and put the plan into motion for my total skin sparing bilateral mastectomy with reconstruction as well as a bilateral salpingo-oophorectomy.

In the summer of 2019 my doctors starting working on coordinating a surgery date that worked with both my breast surgeon and my plastic surgeon’s schedules. When they called me to say they had picked a date and that my bilateral mastectomy surgery would be scheduled for January 24th 2020, I was terrified. I’d never had a surgery before or even broken a bone. I was nervous to say the least, as I had no idea what to expect, or what exactly I had signed up for. They told me I would first have the double mastectomy as well as having expanders placed in my empty breasts to stretch my skin out to prepare them for the implants. A couple months later I would then come back for a second surgery to remove the expanders, replace them with silicone implants, do fat grafting from my stomach to fill in the gaps and the bilateral salpingo-oophorectomy. I didn’t like the idea of having 2 separate surgeries but I trusted that my doctors knew what was best for me. On January 24th, 2020 I became a Previvor after undergoing a prophylactic bilateral mastectomy.

I am a survivor of my predisposition to breast cancer. I’m patiently waiting for my next surgeries so that I can eliminate the huge risk of ovarian cancer that I’m carrying and get myself some more comfortable and nicer looking boobs. I’m looking forward to completing my Previvor journey. I’m so proud of myself for choosing to take action and not letting cancer dictate my life! Sometimes I still can’t believe I got the courage up to go through with it. I am so happy with my decision and I look forward to a long wonderful life! I know my Mom would be so proud of me and I’m sure she’s cheering me on along on this journey from up above.

By Jennah Terry

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.

 

When I was diagnosed with the BRCA mutation in February of 2019, I knew I would have to get a double mastectomy. At that moment I could not pinpoint when a good time would be. Maybe after I get married? Maybe after I have children? Maybe when my kids are older? I was not ready to make that decision.

As months went by, I took measures to help myself physically and emotionally with the news. I got my annual MRI and made an appointment with an oncologist to discuss my options. I also decided to start training for the 2019 NYC marathon and raise money for Sharsheret- an amazing organization that helps women and their families face breast and ovarian cancer. The clear MRI was a huge relief, and running a marathon validated that I was healthy and in control of my diagnosis. However, I still needed to deal with the reality of my BRCA mutation.

My fiancé and I set up an appointment to go see my oncologist for the second time. There I decided that, in the summer of 2021, which would be months after our November 2020 wedding, I would have my double mastectomy. I felt better knowing that we had a set timeline that I would only have to do the intense surveillance for another year. Then we can move on with our lives!

However, 2020 had other plans. When COVID-19 first entered the United States, I really didn’t think it would affect our wedding date. It was March and our wedding was in November. This will certainly be done within 8 months! Yet as schools closed and large gatherings were being shut down, my fiancé’ and I realized that postponing our wedding would be the most realistic and safe option.

As much as it was a bummer that the wedding date was changing, I had something bigger on my mind. How was I going to get my double mastectomy in the summer of 2021 and then get married in November? Would I recover in time? What if I had complications? My entire timeline was turning upside down. I felt like I was losing control and my anxiety was through the roof.

Then, I had a crazy idea. Why don’t I just have my surgery this summer?

You may be thinking, “This woman is insane! We are in the middle of a pandemic! Why would you want to enter a hospital by choice?” Great question. I am a special education teacher at a public school in Manhattan. Having to take off work during the school year is a huge undertaking for a teacher. Organizing sub plans and coverage is more work than actually being there! Plus, I love my job. And now that our students are remote learning, I don’t want to miss a minute of in person teaching when we are back in the classroom. Summers, for me, are the only option.

Another question you may ask: “Why don’t you just wait until after the wedding to get your surgery?” Well, when you are diagnosed with the BRCA mutation, you are given a timeline. Breasts off by age X, have kids by age Y, ovaries out by age Z! Now that the wedding date has changed, I adjusted my timeline in the hopes that the rest of my plans go as anticipated. This enables me to feel more in control of my BRCA mutation, at least in some shape or form.

I describe having the BRCA mutation like this: Let’s say a bee lands on you. It may sting you, it may not. You could just leave it and wait until it starts to hurt. But wouldn’t you just rather get it off? That’s how I feel about getting my breasts removed. I totally understand that not everyone with the BRCA mutation feels this way. And that is ok! Please know that your reasoning is valid. We are all different and cope in various ways, and we should not judge one another based on the path we choose.

Now that our wedding has officially been changed to October 2021, the next step is to choose a surgeon and set a date. Finding a surgeon that is operating during a pandemic is not a walk in the park. Technically this is an elective surgery. Many oncologists are still operating, but not necessarily the plastic surgeons (who do the reconstruction after the oncologist performs the mastectomy). Currently I have two appointments lined up who have confirmed that they will operate. Crossing my fingers that we will set a surgery date for July! It sounds strange, but in a way I am looking forward to the summer surgery. I get to do something healthy for myself- that gives me an element of control of my future. At the end of the day, the decision keeps me safe.

I started this piece with a lot “maybe” questions about when I would have my double mastectomy. Though the timing of that decision has been made, there are still a ton of “maybes.”

Maybe I will get direct implants.

Maybe I will have them above the muscle, or maybe below!

Maybe I will choose to have a DIEP-Flap (where they take fat from other parts of your body and use it in your new breasts).

Maybe my fiancé and mom will be allowed to be with me in the hospital.

Maybe I will have to wear a mask the entire time I’m recovering.

Maybe I will have to get tested for COVID before I enter the hospital.

Maybe I will have to quarantine after the surgery.

A-lot of maybes.  I never thought I would be getting my surgery at this time, let alone during a pandemic. Yet I know it’s the right decision for me, and for my timeline. I’ve been doing plenty of research, perhaps too much. I’ve had a few close calls when sharing screens with my students while teaching. The last thing I want them to see (instead of the math PowerPoint) is a video of a doctor taking out a woman’s drain tubes post-surgery! Because remote teaching isn’t ridiculous enough….

What’s the message of my story? “When we plan, God laughs.” Making these decisions is hard, but I prefer having maybes that represent options, then no options at all. I realize that the world keeps turning even when my plans seem solid and my timeline is defined. “Maybes” are tough, they give you a lot to think about. However, I appreciate having options and the opportunity to exert control of my BRCA mutation, and my life as well. I guess maybes aren’t so bad after all.

By Rachel Samuels

A version of this blog was first posted on All-in with Allyn.