In October 2022, my husband and I had our vow renewal in Mexico. We just moved back from Italy and wanted to celebrate our 2 year anniversary with everyone who missed our wedding in 2020 (including my own parents!) Little did I know it was the last blissful trip in that chapter of my life.
The day before coming home, my parents broke the news that my dad had prostate cancer. They didn’t have details, just that his PSA was elevated. My dad was a doctor, so he just kept saying: “a lot of men live with this for a really long time.” 3 weeks later he was gone. Diagnosis? Small-Cell Prostate Cancer, which in itself is terminal and very rare. It only accounts for about 1% of prostate cancer diagnoses. By the time they found it, it had metastasized throughout his entire body. My dad’s side has a very heavy history of cancer. My grandma – breast cancer, My uncle – a rare pancreatic/renal cancer that took him before he was 50, My grandfather – AML Leukemia, which ironically my mother also fought twice (and WON). The day my father died, his oncologist encouraged me to get genetic testing done- immediately.
Honestly, I didn’t even know what I was looking for, or what I really even expected. Every doctor I’d ever been to told me that because the cancer history was heavy on my paternal side, it didn’t really impact me much. The oncologist I saw started off by saying what many do- “You’re so young!” She was confident that nothing odd was going to show up and that I was just very anxious because of everything I had been through. After that appointment her notes on my chart read: “No obvious abnormalities, but obviously still grieving the loss of father.” About one week later I got my BRCA positive diagnosis.
I was sitting on the couch at my best friend’s house. It wasn’t a big dramatic scene like you see on screens. I was told nonchalantly over the phone. Before I had my follow-up appointment, I had never heard of BRCA. After that appointment? It felt like my entire life had been derailed. [[SIDE NOTE: I have been a Type 1 Diabetic since I was 2 years old. Which has also added Hashimoto’s, Eosinophilic Asthma, and a few other autoimmune issues with it throughout the years. ]] All I could imagine was a future of being poked & prodded with constant fear. What complications will I have? Where will it show up? When? Am I going to die early too?
BRCA takes an insanely large emotional toll on not only us, but our loved ones. You are forced to make HUGE life decisions in a very short amount of time. By my 28th birthday I had already scheduled my first full body & breast MRI, my first colonoscopy, my first mammogram, my first 3d ultrasound, my first plastic surgeon appointment, my first oncologist surgeon appointments, and a few other various ones sprinkled in there- you guys know the ones I’m talking about. On my first MRI they saw “something” on my gallbladder, 3 months later it had doubled in size. I was supposed to be going to Italy with my husband and instead I was getting my gallbladder removed. 4 weeks later, I underwent my bilateral mastectomy with reconstruction. I did not get to keep my nipples. Which I knew before heading into surgery, and have found comfort in the fact 3D nipple tattoos exist.
I got thrombosis (blood clots) in both superficial veins and truthfully I think that has caused me more pain and sleepless nights then my new boobs. I was up and walking the night of my surgery-and even brushed my teeth! I was pretty confident…until the next morning when my plastic surgeon came to check on me. As soon as he opened my bra I got light headed and wanted to throw up. WHO’S BODY IS THIS?!
Personally, the drains were probably THE worst part of this whole experience. I HATED not being able to shower, I was constantly checking if output was slowing, I couldn’t move around too much and I somehow had a reaction to the tape that caused sores on BOTH sides. I don’t care to relive anything similar ever again, but I did it and I am so proud of myself. My ‘foobs’ are still mismatched, one side is struggling to heal more than the other and it has been a huge mental obstacle for me looking in the mirror. I still get light headed and nauseated. I remind myself daily that I have a long road of (much-needed) healing ahead of me.
My preventative total hysterectomy will be within the next 2 years, so screening it is! One of the most asked questions is “how are you?” I always kind of laugh to myself because I really don’t know the answer.
I am OK, but I am NOT okay. I don’t know if I will ever be “ok” again. I just am. I will never be the same person I was before. BRCA has forever changed me. I have forever promised my body to go above and beyond to dodge or beat cancer before it finds me. So, I guess the answer to that question could be I am exhausted. I am angry. I am grieving. I am confused. I am heartbroken. I am scared. I am relieved. I am empowered. I am all of those things and more, sometimes all within the same 24 hour period.
I am trying to love my body again. Not just how it looks, but to love it even though I feel like it has failed me in a way. Once I’m on the other side of the preventative part of my journey, I’d really love to get more involved with supporting others diagnosed with BRCA + autoimmune diseases. As well as, support efforts in making BRCA a more recognizable diagnosis.
– Lauren Papa
My mom had been diagnosed with breast cancer in 2021. She had genetic testing done due to a family history of breast and ovarian cancer. My mom had tested positive for the BRCA 1 gene mutation. So that led my sister’s and I to get genetic testing done. Unfortunately, I tested positive for the BRCA1 gene mutation. Which was so hard to process. But also I was so grateful to know even though it was hard to hear. When I was waiting for the results. I knew if it came back positive, I would have the preventative surgeries. After watching my mom go through hell, I knew what my decision was. I felt like I am lucky to know even though it was hard as hell.
The hardest part was knowing I am healthy and I don’t have cancer. But I knew I had to do it for my life, my husband and my two boys. The weight of it all was so incredibly hard, especially knowing I had to make this life changing decision. Thankfully I met an amazing oncologist who went over my preventative measures and helped me make that decision. She led me to really amazing doctors and surgeons.
I had my first surgery January 2022. For this surgery they took my ovaries and Fallopian Tubes out. Then a few months later in April, I had a prophylactic double mastectomy with reconstruction. I had three more surgeries after that to finish up my breast reconstruction. It has been one of the hardest things to go through. It’s been hard dealing with being slammed into menopause and the struggles that come with that.
Learning so many women don’t talk about it or we feel like we should struggle through it. The other hard thing is losing feeling in my chest. But it’s taught me to advocate for my health. Thankfully my oncologist helped me find doctors to help with all of my symptoms. The stress, anxiety and tears.. I can’t even describe how hard it was. It really took a toll on me emotionally and physically. Life still goes on..but it was so hard still being a mom of two little boys and a full time job and being a wife. I have no regrets and would do it again for my life. I made it and now I am just trying to live my new normal.
If anything that has helped me is wanting to help others going through this. If I can just listen or help anyone going through the struggles of being slammed into menopause. Anyone who had a double mastectomy with reconstruction and the struggles of it emotionally or physically. I really do feel like that’s my purpose. my life has changed so much but it has helped me grow as person. Anyone who has been through this I see you and hear you.
Love,
Angie Guetter
The navigation of advocating for what you want for yourself and your body as a woman can be a difficult, yet incredibly powerful time.
I started my previvor journey at the age of 27 when my mother had been diagnosed with metastatic breast cancer earlier that year- a bit of a surprise after a simple lumpectomy and radiation had left her cancer free for a few years. I was concerned about my risk, especially after my aunt, great aunt and several great aunts beyond them had had breast cancer on my mothers side, and my grandmother, great grandmother and likely some others had had breast cancer on my fathers side. My father had also had a hormonal based cancer years ago, and other cancers riddled other family members throughout the years. My Ashkenazi Jewish ancestry also left me questioning where I sat on the continuum of likely to get breast cancer or not.
While I had been labeled “higher risk” by my gynecologist at the time based on the questionnaires given, there was no discussion about prevention, assessing true risk, doing genetics or anything of the sort–or at least until I turned 35. Intense researching turned me on to the option of a prophylactic mastectomy, genetic testing and getting screened earlier rather than later. As soon as I learned that I should be getting evaluated more often, starting earlier, I switched doctors in hopes of finding someone that might care more about my potential risk and set up an appointment with a breast cancer specialist.
First assessment results with the specialist put me at a 47% risk, without any genetics, MRIs or mammograms being performed. The doctor explained that a prophylactic mastectomy wasn’t something they usually did in people my age, that they’d likely want to take out my ovaries as well, and put me on Tamoxifen and wouldn’t want to do anything like that until at least my mid-30’s. While that left me a little jolted, she did set me up with a genetic counselor and an MRI to get baseline testing. Luckily she did, as these would become important later on. My new gynecologist was immediately concerned about my breast cancer risk. I was so thankful to have so easily found someone that noticed. She set me up with a mammogram, took me off estrogen based birth control and set me up with another breast cancer specialist that worked in her network.
That mammogram and subsequent ultrasound would cost me over $1,500 because I was under the age of 35. Despite doctor referral, high risk history, and now genetics and MRI that showed dense breast tissue, insurance refused to cover the service that is free for older women. The doctor she set me up with wasn’t as concerned as I was and told me again, to wait until I was about 35. I was disgruntled–why should I, as a high risk young woman, have to pay so much money for a potentially life saving procedure? For something that takes 10 minutes and could literally be the difference of noticing something or not. Why should I wait, when I can start monitoring it now–about 10 years earlier than the youngest cancer diagnosis in my family?
For a few years, I put it on the backburner. I started a business, I got married, we went through COVID and I watched my mom get worse and worse as the cancer wrecked her liver. Then one day, at 31, I just decided it was the day to pursue a prophylactic mastectomy again. I set up an appointment with a highly rated doctor in the area, I did tons of research, joined Facebook groups, and knew that my decision had been made. I fully expected to be told no–to have to go to multiple doctors, to fight with insurance, to argue for my right to reduce my cancer risk.
I cried on the way out of the doctor’s office the day of my appointment.
She said yes. She 100% understood my fear, my risk and my decision. She told me insurance would not be a problem, reconstruction would not be a problem and to set up an appointment for surgery when I wanted to do it. She went over every aspect of the surgery, she set the expectations, she answered every question I had. She set up a subsequent appointment with a plastic surgeon to go over reconstruction options. But most of all, she heard me, listened and was so truly compassionate and understanding.
The next few months were filled with a lot–we sold our house and moved, our personal training business was booming, my mom had many hospital stays as the cancer progressed. I had doubts about going through the surgery when my mother ended up in a rehab facility after a long hospital stint–was this the right time? Should I postpone it?
Something told me not to–I had to do this. I had my prophylactic, nipple sparing mastectomy on November 22, 2022 (and finished my implant reconstruction February 8, 2023).
My mom passed away three weeks to the day after my mastectomy. I spent every day of my initial recovery by her side–asking family members to drive me when I couldn’t, having them help me put on masks and gloves when I couldn’t move my arms, having people comment on how they couldn’t believe I was only 6, 10, 12 days out of major surgery. Had I not just had surgery, there is no way my work schedule would have allowed me the chance to do that. The world works in mysterious ways sometimes and told me not to change that time frame.
I have not had one single regret or question about going through the process of becoming a previvor. I am very fortunate to have had no complications but even still, knowing that my risk has gone from 47% to about 2% takes the wall of pressure and anxiety off my chest. Knowing that I will never have to go through what my mom went through makes me breathe a sigh of relief every time I think about my choice. While I don’t think this decision is for everyone, I know 100% that it was the right decision for me. I will continue to share my story, forever, to help other women advocate for themselves, understand their risk and ultimately, do what’s right for them and their body.
– Alexis Payne
In 2013, Angelina Jolie came out with an op-ed in the New York Times, explaining why she was choosing to amputate her breasts. Her announcement put the term “prophylactic mastectomy” on the map for those who had never heard of the BRCA gene. The news anchors read the statistics, “For women who have a BRCA gene mutation, the risk for early breast cancer and ovarian cancer is greatly increased. For first degree relatives of someone who has the genetic mutation, there is a 50% chance that they will also have the mutation. A mastectomy is the literal amputation of the breasts, breast tissue, lining of the chest muscle, nipple, and remaining skin. A bilateral prophylactic mastectomy can lower the risk of breast cancer by 90-95 percent.”
None of the data was new to me. I had known about the BRCA gene for thirteen years. In eighth grade, my mom was tested for the gene. She tested positive. Long before insurance companies considered a mastectomy a preventative life saving procedure, my mother made the decision that she wouldn’t get cancer like her mom. Cancer, specifically breast cancer, runs deep in my family’s gene pool. My grandmother had breast cancer twice; her brother died from it, her sister died from it, and her nephew died from it. My uncle has the gene, my brother has the gene, my cousin has the gene, and I do too.
When I was 19, I was tested– it was just a simple blood test and spit test that was sent to a lab. The results came back a few months later, and I remember getting the call in my college dorm room. I had tested positive for BRCA2. First I felt a rush of quiet shock, then it turned to anger. I called my mom and cried. She cried. She apologized over and over, feeling guilty for having passed this on to me. My mutation was the exact same one she and my grandmother had.
After my genetic testing came back positive, a lot changed. At 19, this was my BRCA2+ reality: I had an 87% risk of developing breast cancer, ovarian cancer, colon cancer, and/or pancreatic cancer in my lifetime. My doctors said I would have until I was 35 before needing to “consider my options”– which basically meant monitoring my body super closely, or deciding to have a double mastectomy and having my ovaries removed to reduce my risk of developing cancer.
Before I’d gotten a positive test, 35 seemed so far away– but afterward, my new reality was always there in front of me. I had to start thinking about the seriousness of life far sooner than I had ever imagined. My doctors encouraged me to make a plan for myself. If I went with my doctors’ recommendation to have my breasts and ovaries removed at 35, what did that mean for my timeline to get married or start a family? I wasn’t ready to start thinking about that. I was in college, just starting to figure out who I was. I was falling in love for the first time. I had just barely started to think about what I wanted to do for a living. Plans about marriage and kids weren’t on my mind at all. But somewhere deep in my gut, the decision was obvious to me. As soon as I finished having kids, I would have my breasts and ovaries removed.
In my early twenties, I could push big life decisions to the corners of my mind, but I couldn’t completely deny my BRCA reality. OB/GYN appointments no longer consisted of just the typical pap smear and a breast exam– it now included a CA125 test– an extra blood test that detected abnormalities that looked like ovarian cancer. By age 25, every doctor appointment was accompanied by conversations about the latest breast cancer research, discussions about the surgery I’d likely have in the future, and a referral for an annual breast MRI.
I found myself at different doctors far more often than I had ever experienced in my life. And none of them were easy. Everyone talks about how awful mammograms are, but I had to do breast MRIs instead of mammograms. Even for young women with the BRCA mutation, mammograms aren’t covered by insurance until 35, so you have no choice by the MRI. And let me tell you, breast MRIs are no walk in the park. You strip down and lay on your chest, balancing your entire upper body on a skinny metal band beneath your sternum. I still remember the discomfort of laying in a superman position with my arms above my head, and having an MRI technician tug on my breasts and pull them down into plastic imaging holes. Then, I’d slide backward into a cramped tube for a half hour while the sounds of magnets and electric currents banged in my ears. It was terrible– and I wasn’t even someone who was claustrophobic or afraid of MRI machines. Each time, I remember thinking how barbaric the whole experience was. I’d come out of the tube and my ribs and sternum would be bright red and bruised from the pressure of my weight. My chest would ache for the next 24 hours. Then I’d wait for the results.
Within a day or two, I’d usually get a call saying that they had found abnormalities on the images and wanted me to come back in for an ultrasound. From age 25 on, this experience repeated too frequently. Every six months, I’d have another exam. They’d find an abnormality, so I’d go back into the MRI machine to see if it had changed shape. For days, I’d dread the phone call. I’d feel panic waiting for results. I played that game for three years.
Then, at 28– a lump. Testing found it to be benign, but the panic you feel when you are BRCA2+ and know you will develop breast cancer in your lifetime… it makes your head spin. Every month when you do your self exam in the shower, you feel a wave of anxiety.
Then my friend, Lynn, was diagnosed with breast cancer…. for the second time. A few months later, she died. A few months after that, another close friend was diagnosed. And a few months after that, my best friend’s sister was diagnosed with stage four breast cancer in her early 30s. A few months later, she was dead.
I talked about the weight of my genetic reality every now and then with my boyfriend. Mostly, I would share my feelings before I would go into appointments or when I got some test results back. I’d talk about the eventuality of surgery, and he would always say, “Oh by the time you have to do that, everything will be so different. You don’t know how medicine will change. There may be a cure. Stop talking like that.”
But I needed to talk about it… to prepare myself for what I knew I would have to do. Even if medical research drastically changed, I still needed to be emotionally prepared to lose my breasts in the event that new technology wouldn’t serve me in time. He didn’t get it. Positivity was going to change my genetic reality. Denial was only going to create impractical and emotionally harmful expectations. I needed to be mentally and emotionally prepared for this.
Even though I knew it was years away, I began confiding more and more in the women in my life who had experience in this area. Fortunately, or perhaps unfortunately, there were many women in my life who had been through some kind of variation of breast cancer, mastectomy, reconstruction, or genetic mutation diagnosis. I was grateful how open they were with every little detail of their surgeries. They made me unafraid to ask uncomfortable questions, and empowered me to be fearless when it came to a topic that so many women were ashamed to discuss.
By 28, I was tired. The year before, my boyfriend and I had broken up after nine years together, I had moved across the country, and I had experienced a medical trauma that had increased my likelihood of developing cancer. Instead of an 87% chance in my lifetime, I was looking at 93% within five years. I didn’t want to wait anymore, and neither did my doctors. The threat of cancer sat inside me and began taking up space in a way that it hadn’t before. So I had a very candid conversation with my medical team: If I waited to have the surgery until after I had kids, I would be able to breastfeed them. But if I waited too long to have kids, I might end up with cancer and then become infertile because of chemo in the process. The choice was clear.
So at age 29, I chose courage instead of fear. I made the choice to say farewell to my breasts, to say goodbye to the plan that I had made when I first got my genetic results back, and to say goodbye to the certainty of breast cancer.
Without question, I can truly say it was the best decision I’ve ever made. Losing my breasts made me stronger than I ever knew possible. It allowed me to see the world through different eyes. In looking for guidance from others who went through cancer and mastectomy, I discovered the power of vulnerability and the importance of a supportive community. In helping others in the midst of their process, I gained a humbling confidence in my decision and the fact that I had a choice. In having surgery reconstruction, I began to cherish a million little things that my body allowed me to do that I once took for granted. In sharing my story, I learned that my experience could help others.
In making the decision to reduce my risk of developing cancer through prophylactic mastectomy, I became a previvor– an advocate for genetic detection and prevention, a voice to improve insurance systems and medical care, a community warrior, and a woman grateful to have had a choice.
By, Lindsay Carver
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 trust my oncology team, I feel like they’ve always heard me, they gave me many options, and they’ve based my care on how well they knew me. That is why a second opinion seemed like nonsense after my metastatic diagnosis. I felt like I would be cheating on them. At the insistence of my oncologist’s NP, she gave the name of the Chief of the Division of Oncology who specializes in breast cancer at the teaching and research hospital in my state. She was fantastic, tender, and gave me the reassurance I needed. We spent over 2 hours going over my chart and family history. She told me that my team was doing exactly what she would be doing, but she took interest in my genetic testing results. Being diagnosed at 33 is not common, so my doctors recommended that I do genetic screening to determine if this cancer was hereditary. My results were inconclusive, there was a variance of uncertain significance (VUS) in the BRCA2 gene, but no finding suggested that breast cancer was a correlation of that.
Okay, time out! I just want you to know that I’m not a doctor or a genetic specialist. Even though I’m an educated Latinx (MPA and jefa status!), I don’t hold advance degrees in medical or genetic science. So, my explanation is based on my understanding and basic research on the interwebs. I just wanted to put that out there.
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My second opinion oncologist asked me if she could have the data analyzed by the genetic research specialist at her hospital, and I agreed. She called me about a week later to tell me that the VUS of my BRCA2 gene had been known to have the same traits of BRCA2, which meant that I carried an inherited mutation that could cause cancer, including breast cancer. This was kind of surprising to hear because I had already been tested a year and a half before and no one else in my family has had breast cancer. I know that breast cancer doesn’t discriminate, but in general Latinx people are not considered a high-risk group for breast cancer and there wasn’t that much data to be found about BRCA2 rates in the Latinx community.
There are genetic disparities in the Latinx community because there is little genetic data and studies done for Latinx people. One of the biggest barriers is awareness and access in the Latinx community. (Journal of Genetic Counseling) This totally made sense to me. Both times I received genetic counseling they seemed extremely interested in getting my family to also get genetic testing, at no cost. Which felt weird, because I had some bumps with my own insurance to cover the testing (which they eventually did). These disparities for the Latinx community are not just in genetic counseling. While Latinx people are not considered high risk, breast cancer is the most common diagnosed cancer in Latinx women, it tends to be diagnosed at a later stage, it tends to affect women who are premenopausal (young women), and it has a high mortality rate after diagnosis. My loose interpretation of BRCA VUS is that there are not enough POC of color being tested, being researched, or being educated to determine if are variances are cancer causing or not.
Now, at the recommendation of both oncology teams they have asked me to reach out to my parents and siblings to be tested. They also think that when my littles turn 18, they should be tested. Breast Cancer is the worst, so is being metastatic. If there is a silver lining out there, it’s that, because of mine and my docs’ diligence, I can help my kids and nieces and nephews hopefully avoid the same fate. When someone is diagnosed with cancer, they begin to collect unique stories worth sharing. For me, the stories most worth sharing are those that will help my people and other people of color.
By: Natalia
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
