On January 29th, 2020 my youngest sister, Lindzey, called me with news that would change my life forever. She said “Lis, I’m in the ER, and the doctor just told me I have stage 4 breast cancer. I don’t know what to do. I haven’t even called mom yet.” She was just 29 years old. She had been in and out of the ER for over two years. She had ongoing rib pain, but the CT scans were always clear. She was dizzy and passing out, but her blood work was always perfect. She had psoriasis like scales on her scalp and ears, but none of the prescription ointments were healing it. She even wore a heart monitor for a week, but there was nothing wrong with her heart. She had test after test, but they could never find anything wrong. But she never had a mammogram, because she was deemed “too young”, even with our family history.
Our grandmother had breast cancer at age 61. Three of our maternal great aunts, and one of our cousins had breast cancer. Our mother had breast cancer in 2009, at age 55. Mom had a double mastectomy, despite the doctor’s recommendation for only a lumpectomy and radiation. And our mom’s younger sister was diagnosed with stage 1 breast cancer in December 2019, just a few weeks before Lindzey, at age 60. Aunt Sue insisted on having a double mastectomy, which was also against “protocol”.
After her diagnosis, Lindzey, our middle sister Loren, and myself all received genetic testing to identify our risk for hereditary cancers. We all share the Chek2 gene mutation. Lindzey also has BRCA2 and APC mutations. And I additionally have the rare MUTHY mutation. Basically, we are high risk for both breast and colon cancer. Our father was diagnosed with stage 3 colon cancer in 2013. In addition to surgery and traditional medicine, we researched and used a holistic approach, changing his diet, and using all natural supplements. This worked and his scans were soon clear. The cancer was gone. But with each clean scan more bad habits crept back in, and by 2015, the cancer spread to his brain. In addition to stereotactic brain radiation, he returned to the holistic approach, but it was too late. The tumors were multiplying and were deemed inoperable. His last hope was whole brain radiation, which left him blind, and eventually in a wheelchair. A few short months later he passed away, in July of 2017, at only 61 years old. This was also when my obsession with organic nutrition, health, and wellness began.
I was my Dad’s patient advocate. I attended most doctor’s appointments in person with him, or on Facetime from my office conference room. My mom was trying to keep her daycare business open, while also trying to cope with the stress of a sick spouse. When Lindzey was diagnosed, she looked to me to do the same. When I got to the ER on that fateful day, I immediately called my dear friend, who also happens to be the Chief Medical Officer at Emory, and asked him to help us. Within a few days, Lindzey had an appointment with her current oncologist, and we couldn’t love her more. I cannot imagine anyone else taking care of my Lindzey. She is a God send. Lindzey also immediately changed her diet, and we started researching all things that fight cancer naturally…again.
Shortly after learning of my gene mutations, I met with a genetic counselor at Emory. The counselor determined that the Chek2 mutation came from mom’s side of the family, and the BRCA2 from dad’s side. The counselor also referred me to a “high risk” team at Emory, which is basically the oncology team. I met with them a few months after Lindzey’s diagnosis. We went through my options…surgery or an advanced screening plan, which would have me screened in some capacity every three months. A mammogram, then three months later a clinical exam, then three months later a breast MRI, then three months later another clinical exam. So only one mammogram and MRI a year, but separating them to be screened more often. I opted for this route. Surgery was the farthest thing from my mind. I was still trying to wrap my brain around Lindzey’s diagnosis. And all my energy and prayers were going to her.
Lindzey gets chemo and immunotherapy treatments at Emory every three weeks, she’s eating mostly raw vegan, taking cancer killing all natural supplements, praying, practicing positive thinking, and THRIVING. Her oncologist is amazed and tells us to keep doing EXACTLY what we are doing. Lindzey is my daily inspiration. She hasn’t missed a beat since her cancer diagnosis. Does she have bad days? Of course she does. Is she exhausted and in pain? Yes, sometimes she is. But she made a decision to LIVE. She gets up, and gets dressed, every day with a purpose. A purpose to tell her story, and to keep fighting. I’m not the only one she inspires daily, she has hundreds of thousands of people following her, and has given so many people, in all different life situations, the will to live. Because of her, I’m trying to live each day to it’s fullest. I’m also still obsessed with nutrition and wellness, and have helped teach dozens of people how to use food, and all natural supplements, to fuel and heal their bodies.
Fast forward to the Spring of 2021. Lindzey is still doing amazing, and I was finally able to take a breathe, and pray for God’s plan for ME. I am 45 years old, the breadwinner for my family, and trying to be the best wife, and mother to our three sons, Vince 15, Duke 10, and Rock 6. God starts to give me subtle nudges to research prophylactic mastectomies. I joined a few private prophylactic mastectomy Facebook groups. I learned that there’s a name for me. I am a Previvor.
My 17th wedding Anniversary was on May 1st, 2021. My husband, Jason, took me to dinner, and then we went to hear my middle sister, Loren, sing. While sitting at the bar I told him that I decided to get a double mastectomy. I had never mentioned it to him before. After a few initial minutes of shock, I only had to say a few sentences, and then he said “You have to do this”. In 2003, the year we were engaged, he made a similar choice. He had a very aggressive strain of testicular cancer and we opted for a radical surgery to remove 26 lymph nodes from his abdomen, before the cancer had a chance to spread. That same friend, who is the Chief Medical Officer at Emory, saved Jason’s life. He was only a few years out of his Urology residency at the time. That surgery also enabled us to have our three greatest blessings, our sons. Jason understood and was 100% supportive of my decision.
So, on October 12th, 2021, I received a prophylactic bilateral mastectomy, with immediate direct to implant reconstruction. As I write this, I am 10 days post op and feeling great. I got my pathology back and my right breast had pre-cancerous cells. These were NOT on my mammogram and MRI just two months prior. I know that I made the right decision. And I now know why God put this so suddenly on my heart. Sometimes I feel guilty for having the chance to do this though. I feel like the role should be reversed. I’m the big sister, I should be the one carrying the burden of cancer, not Lindzey. She should be the one that got this surgery. But I know that God has a plan for everything, and I think this is to show the world that miracles do exist. That no matter what gets thrown at you, if you trust in Him, everything will be not only be ok, but will be better than before. We are already seeing this miracle come to fruition. Lindzey is happier, and better, than before the cancer. She even followed her dreams and started her own streetwear clothing line, with our other sister Loren. She did this with stage 4 cancer, while also having a full time job.
I got a double mastectomy to be here for my Jason. I got it to be here for our three sons. I got it to be here for my mom. I got it to be here for my Lindzey. And I got it to not only to be here for my sister Loren, but to be a role model for her, to maybe one day consider this surgery for herself. I’ve also been very open on social media about my journey, and have since learned of numerous friends, and even some strangers, who are high risk and considering this surgery. I didn’t know it before, but I also did this for all of them. If I can help save just one person’s life with my story, then it was worth sharing.
by Lisa Hakim
I am a previvor…and most people don’t know what that means. I am part of the cancer community, but I’ve never had cancer. My life was forever changed based on the probability of having cancer; a simple genetic test started this amazingly wonderful, scary rollercoaster ride. I casually had genetic testing done during an annual exam and my results revealed that I had a 75% chance of developing breast cancer and an 80% chance of developing ovarian cancer within my lifetime. As the daughter of a breast cancer survivor, I always figured I might be susceptible to the disease but seeing the percentage of probability had me frightfully shaken! I have watched my mother battle breast cancer twice and most recently stood by helplessly as my baby sister fought her way through this same dreadful disease. Cancer continues to upset the balance of our family and threatens to disrupt our peace, but what it hasn’t realized is that we are a family of warriors, and these challenges only serve to strengthen us and test our resiliency.
I have spent most of my life waiting on cancer to find me, accepting my fate as a rite of passage like my mother and sister before me, but genetic testing shifted my mindset and totally changed the game. It allowed me to make a proactive decision instead of a reactive one. Deciding to have a preventative mastectomy and hysterectomy was a huge decision. My life was forever changed but in all the best ways! When I considered having the surgeries, I could only focus on what I would lose. I didn’t consider how much I could gain. I fought back and I don’t have to live the rest of my life waiting on breast and ovarian cancer to casually show up and threaten the very essence of me, to stifle my livelihood, or to take my life. I can live in peace knowing that in having the surgeries I reduced my chances of having breast and ovarian cancers to 1%.
My mother had her first bout with cancer when I was in college. I remember calling home to check on her and she would often tell me, “Focus on school, I’m fine”. I was away at school in Missouri, more than 10 hours away while my family was in Texas, but I felt the weight of that experience every day. It was such a scary time for our family. I felt like I woke up each day in a fog and spent most of it holding my breath waiting on a phone call that could change my life forever. I was so young, and also a single mom and I needed my mom more than ever during this time. The rollercoaster of emotions was endless. There were days that I would feel hurt, rage, sadness, and fear, but all the while, my mother relied on her faith, surrounded herself with positive energy and friends, and was fortified and strengthened by this experience. Then ten years later, it happened again. My mother found another lump. As our family braced itself for another rollercoaster ride, my mother was unshakeable and unflappable through it all. She propped us all up and readied us once again for the fight of our lives and we are more than grateful that she came out whole, healed and healthy on the other side. She is the glue that holds our family together and her presence sets the tone for everything that we do in our lives. I am thankful that she is still here to tell her own story.
My mother found both of her lumps through self-breast exams, and she would preach to all of us (her three daughters) religiously about the importance of knowing your body and performing monthly self-exams. She even bought us the tutorial placards with the pictures to hang in the shower and made us practice “finding the pea” in the mock boobs. She was insistent on us staying one step ahead of this dreadful disease. She is the best example of advocacy beginning at home within our own four walls. I am embarrassed to share that I was horrible about self-breast exams. I was so afraid of what I might find. I was crippled by fear and the panic of reliving my mother’s experience. I know that there may be others like me, so I advocate fiercely now for monthly self-breast exams and knowing your body well enough to know “what right looks like”. Awareness is such an important tool in fighting this dreadful disease and it can make a difference in life and death.
My life as a previvor has gifted me with an amazing sense of hope and I see each new day with fresh eyes because I decided to fight for my life, even when it might not make sense to some people. I am no longer haunted by the fear of suddenly finding a lump and disrupting everything that I hold closest to me. I view each day as an opportunity to learn more things and soak in every bit of goodness around me because I have seen firsthand the impact of cancer on a family. Any doubt that I may have had about my decision to have surgery was lifted after watching my mother’s pain as my sister battled breast cancer. I could never watch her go through that again. Each day I am more confident and resolute that this was the best decision for me. I have become a part of an amazing sisterhood and I am encouraged each day by their strength and resiliency.
Through this process, I have watched the best parts of myself unfold. I have uncovered my voice and a passion to enrich, inspire and spread the word about the importance of genetic testing. Preventative surgeries may not be for everyone but having genetic testing arms you with the information to make an informed decision. Knowing allows for consistent and thorough monitoring which helps the doctors to detect breast and ovarian cancer sooner. To me, that’s a game-changer!
As I write this, I’m 20 weeks pregnant. It’s unbelievable to think I’m almost halfway through my first pregnancy. Time has seemingly flown by in comparison to how long it took to get here.
I am a carrier of a rare X-linked genetic mutation that claimed the lives of three of my uncles and countless others before them. Determined to have this sad legacy end with me, my husband and I underwent the IVF process with Shady Grove Fertility, along with genetic testing on our embryos, to screen out this disease. It seems so simple typing that sentence now but it took a 10-month emotional roller coaster to get here.
As the daughter, granddaughter and niece of women who lost their lives to breast cancer, I’ve always been acutely aware of my family’s health history. Because of this strong hereditary link to breast cancer, I always feared that I, too, may suffer the same fate. Armed with that knowledge, and with the advice of my doctor, I underwent a preventive double mastectomy at 26, just 3 months shy of the age at which my mother was first diagnosed. Having lost my mother to breast cancer when I was 16 years old, I knew what it was like to face spending the rest of my life without my mother. I didn’t want my future children to ever experience that pain. So taking charge of my health in order to be alive for my future partner and future children was my main motivation. But my preventative healthcare journey didn’t end there.
Although I tested negative for a breast cancer gene mutation (which can increase your likelihood of developing breast cancer by upwards of 80%), I has tested positive as a carrier for Wiskott-Aldrich syndrome, a rare X-linked recessive disease, causing autoimmune deficiency and other potentially fatal side effects. This meant that 50% of my male children would have the disease and 50% of my female children would be carriers (like me) and be able to pass the disease on to their future children. For years, I had been counseling women in the breast cancer community with known mutations to consider IVF with PGT (preimplantation genetic testing) as a way to avoid passing on potentially deadly cancer mutations. Now it was my turn to be proactive, this time for the health of my future children.
The process involved two egg retrievals, wherein my fertility specialist, Dr. Kate Devine, prescribed me a series of ovarian stimulation drugs that I had to inject over a 2-3 week period. This caused follicles (tiny egg sacks) in my ovaries to grow and those eggs were them retrieved, fertilized, and the subsequent embryos sent to a lab for genetic testing. Again, typing it seems simple, but it involved injecting myself in the stomach several times a day for weeks in order to grow those eggs, then undergoing surgery with anesthesia to remove them and the worst part, waiting 3 weeks to hear if any of those embryos were healthy. I was devastated when my first round resulted in only one viable embryo. I knew that I wanted a big family – that meant doing it all over again (and hoping for a better outcome). I was one of the lucky ones and my second retrieval yielded 3 more embryos, leaving my husband and I with 4 mutation free potential children. We were thrilled; but the journey didn’t end there. I know had to undergo another procedure to implant the embryo in my uterus and hope that it “stuck.”
Well, 12 days after that transfer, I was greeted with 2 dark red lines on a home pregnancy test, giving me what the IVF community calls a “BFP” or BIG FAT POSITIVE!
We were part of the lucky few who got pregnant on their first try with IVF. I owe that success in large part to my wonderful team of doctors the fact that I did everything possible to ensure that the embryo implanted was as healthy as possible. I felt a sense of pride knowing that before I even met my baby, I had done everything in my power to make sure it had the best chance to succeed in life. It was my first experience “mothering.”
With another 20 weeks and a lifetime ahead of me, I truly believe that my experience with IVF helped prepare me to become a mother. It forces you to be present and deliberate in your choices, to have long term perspective and to put the needs of others before your own. I am so grateful to have had the opportunity to make positive strides towards becoming a mother, particularly during such unprecedented times (Hello, global pandemic). And although it can feel lonely at times without my own mother to guide me, I’m so thankful for the village of other women (including complete strangers on the internet) who have loved and supported my journey along the way. I couldn’t have done it without you.
By Allyn Rose
My story doesn’t start with me, it starts with my mother. My family is from a small town, near Youngstown, OH. Growing up in a 100% dominate Italian Family, we were all very close. Friends were family and the door was always open. I was your typical child; the oldest of 2 children. In 2000, at 36 years old my mother was diagnosed with Breast Cancer. At 11 years old, my world changed. My brother and I were kept hidden from the majority of our mom’s diagnosis.
After the initial diagnosis, a couple years later the cancer returned. My parents decided to get a second opinion. Again, my brother and I were shielded, but our mother didn’t show any pain. She made it to every school and sporting event. She was literally the strongest person we knew. How does one go through Chemo and Radiation and still smile every day?
At 18, I was applying to college and starting the next chapter of my life. But things took a turn. My mother was losing weight and on oxygen all the time. My mother planned my graduation party for me, 300 people later it was one amazing party. One week later she passed away on June 29, 2007. Years later I realized she only made it as long as she did for the party. As much as that party was for me, it was also for her.
I went to college per my family’s wishes. I saw a therapist once a week for 4 years. Life was not easy, but I took what God handed me and made the most of life. In 2007, during my fall semester at college, I had this gut feeling to get tested for the BRCA mutation. When I finally saw the genetic counselor, the doctor told me to wait until after I graduated college and try to live my life as best I could. My mother wasn’t tested and we didn’t have any family history (2 or more people with Breast or Ovarian Cancer). So I did what the doctor told me to do. Four years later in 2011, I graduated college and landed an amazing job. I honestly didn’t think I was going to graduate. It was a rough 4 years but I did it!
In 2014, at 24 I started early screening: mammograms and breast MRIs as well as ovarian testing every 6 months. Finally in June of 2015 I decided to get tested, the gut feeling was still there. The doctors thought I was crazy but I didn’t care. Even if I didn’t have the genetic marker, I was still at a higher risk given my mother’s young diagnosis. So on that day In June of 2015, I gave blood for the BRCA Mutation Test. One month later I met with the genetic councilor to get my results: BRCA 2+. Here was my first lesson I learned as an adult: Self Advocacy. I was my OWN voice and got tested. I listened to my gut feeling even when the doctors told me I shouldn’t be tested.
After the realization of my mutation, a couple tears, and 9 holes of golf with my dad 9 (he never missed a doctor’s appointment), I had a lot to think about. But one thing was for certain, I was relieved to know; knowledge is a powerful thing. After many conversations and much support from my dad and boyfriend (now husband), we decided to do the 6 month screening. When my husband and I got engaged in 2016, and our life was moving forward, I started thinking more about our future. I realized that I didn’t want to live in fear and wait around for the test results. So, we got married in July of 2017, went on an amazing honeymoon, and then we had a more serious conversation about our future: do the surgery now or later. Well, a couple months later in April of 2018 I underwent a prophylactic double mastectomy with tissue expanders and in November of 2018 I had my exchange surgery and received my implants. The months and days leading up to the surgery were full or emotion: I felt strong, happy, and smart but I was also scared. I wasn’t sad about losing my breasts, I was relieved.
After I completed my exchange surgery, I decided I wanted to tell my story. So I posted my story on Instagram and Facebook. I was a little nervous as I’m a very private person, only close family and friends, and my employer knew about the surgery. I wasn’t afraid to tell people about my surgery, I LOVED telling my story. It shows I wasn’t afraid to stand up for what I thought or wanted. It shows I was brave and smart. I wish I would have documented more of my journey. The reason for not coming forward sooner was for the judgment society gives women. The BIGGEST judgement women have against other women – breastfeeding your children. I didn’t want to hear the just wait so you can breastfeed your children and do the surgery later. What if I waited and then I got Breast Cancer?
Here’s the thing – WHY does that matter how my potential future children get fed? Shouldn’t the conversation be – wow you did something brave, you SAVED your life. I was afraid for the feedback and judgement once I hit submit and then I realized: I saved my life, I’m a Previvor. And guess what, all the comments were amazing, everyone was amazed at my courage and it started something that many of us weren’t talking about: Testing. But here’s the best part of my story: I WILL be around for my children, my family, and my friends. And honestly that’s all that matters! I wish what we knew back in 2000 what we know now about testing and preventative measures – it DOES and WILL save lives. So many many lives.
By Erika McNulty
I discovered that I was BRCA1+ in November 2017 shortly before my 29th birthday. I have a strong maternal family history of breast cancer including my mother, my aunt twice, and great aunts. My mother was diagnosed with breast cancer when I was in elementary school in the late 1990s, completed genetic testing, and discovered that she was BRCA1+. Many years later when I was in graduate school, my mom told me and my siblings about her genetic status and encouraged us to get tested when we were ready.
I sat with this information for several years before finally making a genetic counseling appointment in fall 2017. I went into testing assuming that I would be positive for the mutation and would be pleasantly surprised if it was negative, figuring that would be the easiest way to cope with either outcome. Intuitively, I knew I was BRCA1+, so when I got the positive result it validated what I already intrinsically knew. After two years of breast MRIs and mammograms, I decided to have my prophylactic bilateral mastectomy in January 2020, a couple days after my 31st birthday and a phenomenal bye bye boobies birthday party with family and friends. I was so confident in my decision to have a preventative mastectomy. I was determined to reframe this huge surgery into a celebration of life and taking control of my future. I had done a ton of research, talked to many other women about their mastectomies, and knew all the lingo and questions to ask my very capable surgeons. My breast and plastic surgeons agreed that as a young healthy woman that I would have a very positive outcome. My breast surgeon said that she was excited for my mastectomy and reconstruction because she believed that I would have aesthetically good results. I never for a second thought that things might not go to plan.
I had my nipple-sparing mastectomy with placement of over-the-muscle tissue expanders on January 6th, 2020. After surgery, there were issues with blood flow to my nipples, especially my left nipple, that my surgeons monitored closely. My breast surgeon enthusiastically told me that the nipples want to live and would likely survive. I believed that my nipples were resilient and would heal, but after three weeks with minimal progress despite use of various creams to promote healing and stimulate blood flow, my left nipple and surrounding skin continued to get darker and darker as did a small part of my right nipple. I remember sitting in my plastic surgeon’s office on a Thursday afternoon, thrilled to finally have my last 2 drains out after 2.5 weeks, when he told me that he would remove the necrotic tissue on my left breast, including my entire left nipple and part of my right nipple. In that moment, I went into a full comedy routine a la Marvelous Mrs. Maisel which had the whole plastics team laughing. The moment that the plastics team stepped out of the room, I immediately started crying. How could this be happening? I’m young, healthy, and was going to have a great aesthetic outcome and now I’m losing a nipple. It wasn’t supposed to happen this way but I continued to smile, make the best of it, to crack jokes and remain optimistic. The necrotic tissue was removed the following Tuesday when I bid farewell to my left nipple and part of my right nipple.
I chose to focus on the funnier moments to balance out the moments of medical trauma, like when the water stopped in the middle of my pre-op Hibiclens shower the night before my revision surgery so I stood wet with my breasts wrapped in a black garbage bag calling friends that lived nearby to see if I could finish my shower at their house. I had a wound vac for a week after this revision surgery which I joked made me feel like a cow constantly being milked. I decorated my wound vac to look like it had a face and pretended that it was a walkie-talkie. I chuckled as I would stuff my bra like a middle school girl before I went out to make my chest look a bit more normal. These moments of levity brought lightness to a very challenging situation that I had little control over.
Once the wound vac and drains were removed, I was left with a giant three-pronged scar on my left breast and a smaller version on my right breast. While it was nice to see my body without any dying tissue, I felt deformed and disfigured. I thought I was in the clear until the centers of both wounds didn’t heal resulting in multiple in-office visits getting new stitches and the sudden development of a seroma which lead to a hospital visit for ultrasound-guided drainage. It was then that staying positive and making jokes to stay afloat didn’t feel like enough anymore. Smiling became draining, laughing felt dimensionless and exhausting, and staying optimistic was getting harder. I grieved the loss of my breasts as I knew them and the unexpected loss of my nipple. I struggled with temporarily being completely flat. This process was changing me both physically and emotionally in ways I didn’t anticipate. I leaned on friends, family, and started therapy for additional support.
After a few dark weeks, my healing started to turn around. Both breast wounds closed and the serous fluid reabsorbed into my body. I was cleared to drive after over two months and regained a bit more independence. It felt amazing to see my body rebuild from the trauma it had been through. I finally started having expander fills slowly but surely and felt more like myself everyday as the intense anxiety over what complication might be coming next began to subside as my body continued to transform and heal.
Through my mastectomy, I learned that positivity isn’t about perfection. Positivity is about having restorative practices like finding humor in stressful moments, getting help from others, maintaining optimism when things don’t go as planned, and focusing on what we do have control over when life feels overwhelming and chaotic. Remaining positive isn’t all sunshine and rainbows, it’s about finding the break in the clouds where the sunlight is trickling though that reminds us that the storm will come to an end.
By Sabrina Starkman
I remember very distinctly the day that I was tested for the BRCA 1 and 2 mutations. I sat patiently in my OBGYN’s office, staring at the posters about birth control… pregnancy… STDs, but none of them referencing the decision that I was about to make. I was choosing to be tested for a gene mutation that could increase my lifetime likelihood of breast cancer to 72% and ovarian cancer to 39%. But to be honest, I was pretty calm about the entire process. Why? Because I was all but certain that my results would come back positive.
By the time I was 16, I had lost by mother, grandmother and great aunt to breast cancer. This sad legacy was something that I was acutely aware of for most of my life. By the time I was born, my mother was already a 7 year breast cancer survivor. At age 27, she was diagnosed with a Stage 3 invasive ductal carcinoma in her right breast. She underwent a unilateral mastectomy all the way down to the chest wall. Despite several attempts, she was unable to reconstruct and lived my entire childhood with one breast. One of my earliest memories was looking up at her as she dressed, a ritual that always included the placement of a breast form. Twenty years ago, women didn’t have the same options that they do today. My mother’s prosthesis was a cumbersome, beige, silicone “breast” (a generous description) that required her to wear a “heavy duty” support bra at all times. If she wanted to wear a normal bra, she had an oval-shaped cotton pad that (roughly) mimicked the shape of a real breast. But she made do. At the end of the day, the most important thing was that she was alive… she was a survivor.
Just one month shy of my 14th birthday, while snooping through my mother’s mail, I discovered a wig catalog. I assumed that it was trash and as I went to throw it in the garbage, my mother stopped me — “We need to talk.” I don’t know how, but I knew in that instant that she had cancer again and that everything wasn’t going to be okay. It’s been 15 years since I lost my mom and I have tears in my eyes typing that last sentence. But that emotion is precisely why I am writing this blog today. My mother’s story wasn’t in vain. Because of that loss, I am strong, I am proactive — I am a previvor.
My journey to becoming a previvor started the day I was tested for BRCA. I was all but certain that this simple blood test was going to change the trajectory of my life. Flash forward one month. I walked to my mailbox and there it was – my genetic test results. With the wad of remaining mail tucked in my armpit, I ripped open the envelope and quickly scanned the page. NO MUTATION FOUND. I stopped and looked closer. NO MUTATION FOUND. I thought for certain that I was reading something wrong as I unlocked my front door. I sat down on the couch and read it again. NO MUTATION FOUND.
I really wish I could have been a fly on the wall to capture my expression as I just stared at this single sheet of paper. For most women waiting for their results, there is a sense of anxiety… of waiting to hear if your life is going to change. As odd as it sounds, for me, it was almost worse finding out that I didn’t have BRCA. The same thought kept running through my head: What the heck is wrong with my family then? A BRCA mutation diagnosis is a starting point for many women. They assess their risk(s) and then decide on a course of action. But… I had already decided – a bilateral, prophylactic mastectomy. This would be an effort to prolong my life… a way to avoid the same sad fate as all of the women in my family. But what was I supposed to do now?
I was incredibly fortunate to have a wonderful breast surgeon, Dr. Eleni Tousimis of Georgetown University Hospital. Dr. Tousimis listened to me as I voiced my concerns, reviewed my family history and together we mapped a plan of action. We would move forward with a preventative mastectomy. Dr. Tousimis reminded me that only 10% of women diagnosed with breast cancer have a BRCA 1 or 2 mutation, and that even though I had not tested positive for THESE gene mutations, it was possible that I might have another. Or even more likely, based on my family history, I may have a gene mutation that modern science simply hasn’t discovered yet.
I remember feeling very calm walking out of that appointment, which is odd considering the circumstances: I was a 25 year old woman who had decided to prophylactically remove both of my breasts to hopefully avoid the disease that had plagued my family. But you know what… the most important thing that I’ve learned on this journey is that the scariest part of it all is the fear of the unknown. This is why it is SO important that we get informed, we know “our normal” and we continue to be our own best advocates. The more you know, the less intimidating the entire process is. And to top it off, when you can find a group of women like the patient advocates at the AiRS Foundation to support you along the way, you’ve got nothing to be scared of. For more information on how you can get tested for a breast cancer gene mutation, visit: beBRCAaware
By Allyn Rose
