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

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

 

 

In 1994, I was 28 years old and recently married. I had a small, thriving, decorative painting business on Long Island, New York. I was healthy and an avid runner. I had a lovely home with my husband Alex, with a little room as my art studio, the future was bright. One day I was painting a clients ceiling… clouds and sky… and as always when painting a ceiling after many hours, my neck hurt. I came home, went for a run, took a shower hoping to ease my neck pain. My husband rubbed my stiff neck. As he was rubbing, he noticed a lump on my right clavicle. He asked how long it had been there. I had not noticed… I returned to work the next day, not feeling great, body ache and a little nauseous. Could I be pregnant, I thought? The neck pain was getting unbearable, I went for a massage and then I was able to see a local chiropractor where I got an x-ray. The Chiropractor didn’t like what she saw… and had me go down the block to a doctor who specialized in infectious disease. He had me go to a local lab to get blood work… 20 vials later I was able to go home. I remember the nurse at the lab saying… “they are looking for something…” from a stiff neck I thought?

Within a few days, I got a call…” you have Lymphoma…” it was all I heard. I had no idea what that was… there was no internet to look up the word, all I had was an old medical book from 1946. I learned Lymphoma was cancer of the lymphatic system. I was 28 and had stage llb Hogkins Lymphoma. It was often a young person’s cancer, I found a new doctor… and an oncologist. When I went to the office with my Mom, all the patients were elderly. When the nurse called my name, they looked at my Mom. During the consultation, he told me I had a grapefruit size mass between my heart and my lungs. I would need a prophylactic splenectomy and several rounds of radiation” the treatment will most likely leave you infertile,” he said. I ran out of the office to my car. I cried and cried. How was I going to tell my new husband, not only that I have cancer, but we couldn’t have kids? My mom got in the car and cried with me. I went home… and just recall my husband throwing a chair in anger and fear. We then went to fertility specialists, we were going to try to freeze my eggs, but ultimately there was no time. They wanted me to have surgery and radiation as soon as possible for fear of spreading. Lymphoma was the “easy” cancer when caught quickly… but it could easily spread quickly through the lymphatic system attaching to other organs. At this time, I went into my little art studio and drew… large, rough, dirty angry charcoals… I tore them down stuffed them in the closet, not to be seen.

 

 

 

 

 

 

My art is still ever changing, now Im piecing together works I did over the 20+ years… and I’m still putting the pieces of my life together. My scars are the map of my ongoing journey! As happy as I am to be able to live this life… my thoughts of having another cancer are always there… then I look at Leonardo and forget it all and smile!

 

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!

I discovered that I was BRCA1+ in November 2017 shortly before my 29^th 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 31^st 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 6^th, 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 have this running joke that began at age 40. Every year around my birthday, I have some new diagnosis to wrangle with. The birthday present at 40 was PCOS, or Polycystic Ovarian Syndrome. Poly what? I consider myself to be quite savvy in all things medically related, but I had never heard of this one. Four letters that were a huge pain in my butt. My skin looked like I was 13 again, and no matter how much I worked out, I was packing on the weight. Some birthday present, eh?

Looking back, it was at 40 that my hormones began to wreak havoc on my body. At the time, I was training hard with the hopes of getting into serious bodybuilding. Completely changing my diet and exercise, and consuming a large amount of protein daily probably were not the kindest things I could have done to my body. However, I also believe to my core that I was perimenopausal at the time, despite my healthcare providers telling me I was way too young.

The next couple years, my “birthday presents” were surgeries – knee and shoulder injuries from roller derby (completely worth it). Year 43 was extra special, and I say that with a massive dose of sarcasm. What I first chalked up to PCOS, continued to nag my inner knowing. My body was telling me something different and I posed the question to my doctor that I really did not want the answer to…”Do you think I’m in menopause?” Even then, my doctor still claimed I was too young. I pushed back with, “Can we at least do the blood test?” Sure enough, I was knee deep in what affectionately became known as Esther the Menopause Monster.

Esther and I became very well-acquainted. We hung out together often. I would know she was visiting because she would cause me to lose my patience or make me super-hot. Hot like the Sierra Desert, not hot like Jason Momoa. The characteristic I liked least about her was her stubbornness. No matter what I did for exercise or what I ate, she would hang out around my waistline. Worse yet, I caught a glimpse of my butt in the kids’ bathroom mirror and swore it belonged to someone else…like the lunch lady I remembered in elementary school. What in the hell was happening to my svelte little figure I had known all my life, even after having four babies?!

The year of my 44th birthday, I was going to see how Esther and I could “be on a break,” with a little intervention from some hormone therapy. Doing my research, I thought bio identicals would be the safest. Considering my family health history, and taking some guidance from my doctor, I decided it would be best to undergo genetic testing to know the best course of action. And so, it was determined that my present for birthday 44 was going to be a BRCA1 positive diagnosis. 2019 was the year of seven related surgeries – an oophorectomy followed by six breast surgeries, including a double mastectomy, implants, ex-plants, and multiple “fixes” to take care of scarring, infection and open wounds. 2019 can bite me.

The year of birthday 45 has been different from all the rest, and not just because it happened during quarantine. It has been the year of re-learning how to love myself and my body. This trusty little machine has been through a lot. A fibromyalgia diagnosis and arthritis in my thirties, derby surgeries, now eight BRCA1 surgeries, and co-habitating with Esther. While I work out seven days a week and eat clean, the shape of my body is simply not the same, which I attribute to surgeries and hormone changes. Weight is hanging out in new places, and cellulite has taken up residence alongside Esther. I do not have my 20-something figure, or even my 30-something figure. But then again, I am not supposed to. That is a fallacy put on us by society and I have carried it around on my shoulders for far too long. So, year 45 is the year of acceptance.

Please don’t mistake my acceptance as giving up, they are not the same. I will continue to fight for my health and do the things I can do to be kinder to my body. Instead of being rough on her, I will be gentle and more forgiving. I will not look at what I have lost, but rather have appreciation and gratitude for how far this strong, tough girl has gotten me over the years. Chasing babies, going on walks with my kids, roller skating, running, lifting weights, walking 20 5 Ks in 2020, and now taking on a 10-week workout challenge. Rather than missing what was, I will give thanks for where I am – still able to take part in activities that feed my soul. I will let go of what society tells me I should look like, and re-define my own beauty, inside and out, that tells the story of my journey.

And so, my beautiful sisters out there in the world, I encourage you to do the same. Let go of the comparison, the anger, the frustration and the embarrassment. Stop shaming your own body and listening to how others define beauty. That, my dear, is up to you. Decide to meet your body where she is at. Thank her. Praise her. Speak kindly to her the next time you see her in the mirror. Most importantly, love her and appreciate her for where she has carried you and where she will be taking you.

By Amy Proffitt

My story is one that unfolded over several years.  Growing up in a small family of four, we have always been close.  I have an older sister, who at 36 was diagnosed with breast cancer – a major shock to my family, to say the least. I vividly remember the day I found out. It was July 2014, Labor Day weekend in NYC, and I was sitting in the corner of a shoe store at Macy’s, with about five pairs of shoes at my feet. My biggest decision in life at that point was of course, “Which ones should I get?”  My phone rings and it was my mom calling, from Dubai.

That cliché phone call that changes your life in a matter of seconds.

Upon hearing the news of my sister’s malignant lump in her breast, we scrambled to get ourselves informed as a family; our blissfully simple lives were overturned and we were suddenly thrust into the complex world of medical jargon: chemo, estrogen and progesterone, BRCA+, and—what was soon to be the biggest game changer for me – bilateral mastectomies.

Not only did my sister and I both carry the BRCA+1 (or “Angelina Jolie gene”), but we were both suddenly faced with big life decisions regarding the fate of our breasts.  With my sister who underwent chemo, breast reconstruction for her meant rebuilding after a rigorous round of chemo.  For me, upon learning that I had a 80+% chance of getting breast cancer in my lifetime, my decision was instantaneous – I knew without a doubt that I would undergo what medically is called a “prophylactic bilateral preventative mastectomy and reconstruction;” in normal lingo: chop off my boobs and get new ones.

It was indeed a lot to digest. How quickly life can change.  Only one month before, I was planning a trip to Bali and on a whim had decided to get my breasts checked – considering it was breast cancer awareness month, October 2015.  Little did I know that that one incident would have such a domino effect.

Fast forward to 2016, sitting on the operative table about to get my boobs removed, I pondered over life’s choices and decisions; from proactively getting my breasts checked and insisting that further testing be done, to undergoing a biopsy on a lump that, although was benign, eventually led me to do a gene test.  Only to arrive on this very table, about to face the biggest surgery of my life, when I had never had so much as a stitch in my body before.  I truly felt like a warrior.

I now embrace my new “foobs” as they’re called (fake + boobs!).  Yes, I lost my boobs. But I gained a friend in the form of acceptance, fear’s long-time foe.   I hope through this story you realize just how strong and resilient we are; and that with the right knowledge, tools, and resources, we can overcome anything.  Even fear.

By Reema Mehra

In 2010 I was diagnosed with Hodgkin’s Lymphoma and then breast cancer in 2011. I went through chemotherapy and multiple surgeries, as well as holistic and integrative treatments. The lymphoma quickly healed, but breast cancer continued to haunt me. I experienced several recurrences which resulted in excessive surgeries, treatments and cosmetic procedures.

I was a self-proclaimed vanity queen before cancer. I wouldn’t dare leave the house without makeup and I loved to dress provocatively. Turning heads fueled me. After cancer I was desperate to have some semblance of the body I once had, the one that turned heads and made me feel desirable. But every surgery led to more complications and a more mutilated appearance. Eventually, I decided to have my breast implants removed and opt for a fat grafting cosmetic procedure. I had the good sense to remove the foreign objects that I believed were causing complications, but again I was so desperate for an acceptable physique that I was willing to go under the knife once more for what I thought was a healthier option.

Removing my implants was a very difficult decision, but one that I felt was necessary. I was supposed to have multiple fat grafting procedures but after the second one, the unthinkable happened. I had complications and another cancer recurrence. This brought new meaning to the term ‘drop dead gorgeous’. Up to that point I was so desperate for a beautiful body at any cost, but finally I came to the conclusion my vanity might end up killing me.

Until this turning point I had been primarily focused on the aesthetics of my physical self and I wasn’t giving my precious body the time and space to heal. In addition, I wasn’t considering the mental and emotional toll it was taking. When I had the recurrence after the fat grafting procedure, I became depressed because not only did my body look worse than ever, but I was fighting for my life once more. I started to give up hope that I would ever fully heal or ever feel comfortable in my body again.

It quickly became evident that I needed to redirect my focus from wanting a sexy body to fully healing my body and accepting it for the miraculous machine that it is. In addition to healing on a physical level I made a commitment to heal myself emotionally so that I could finally live a fulfilling life of self-worth and self-love. I started looking into natural methods to support my process, which included deep inner work and meditation. This opened the door to emotional and spiritual healing. From that moment I set out on a soul searching journey. Deep down I knew that my breasts (or lack thereof) didn’t define me, but when I looked in the mirror, I felt like less than a woman. I longed for the body I once knew, the one that got attention. And so, the grieving process began.

Mourning who I used to be was so important. I needed to grieve the person I once was to accept the person I now saw. I experienced all of the emotions: anger, sorrow, depression, resentment, shame and I allowed myself to mourn. I knew that if I wanted move forward and find happiness and fulfillment, I would need to find a way to accept my new body.

Day by day I dug a little deeper, practicing self-love and acceptance. I spent a lot of time alone, caring for myself and really getting to know who I truly am. I took time to disconnect from the outer world to go inward. I adopted intimate self-care rituals to get reacquainted with my body. It wasn’t easy but I was committed. In my quest to accept this new body, I began realizing that there is so much more to me than I ever knew. I learned that my body is just my vehicle in this life, but my soul is the driver. My body is the physical part of me that I need to take care of so I can enjoy all that life has to offer, but the mental, emotional and spiritual aspects are the driving forces of my well-being. I soon acknowledged that those aspects of my health had been sadly overlooked.

As I continued soul searching, I concluded that there is much more to me than meets the eye and the real me is something greater than I ever could have imagined. The more I did this inner work and connected with my true essence, the more I realized that the way I look on the surface does not matter in the big picture. I didn’t need anything outside of me to make me feel worthy or valued. It was always within me. I decided to redefine sexy on my own terms. To me, sexy means being empowered, confident and desirable. I proudly declared that I am all of these things down to my soul. I am eternally sexy. This led me to fully accept and unconditionally love all parts of me. Cancer unexpectedly guided me through this awakening and made me into the best version of myself. I never really loved and appreciated myself before cancer and I can say wholeheartedly that I do now. The search for my true sexiness cracked me wide open to reveal my soul, the non-material essence of who I truly am. This is what really matters. This is what is sexy.

From this powerful awakening, Sexy Soul Search was born, a spiritual journey of self-discovery. It is my honor and privilege to share this process with my fellow thrivers. To help them discover that they are so much more than their body. That their true sexiness radiates from their soul.

By Cat Phillips
@sexysoulsearch