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

My story doesn’t start with me, it starts with my mother. My family is from a small town, near Youngstown, OH.  Growing up in a 100% dominate Italian Family, we were all very close.  Friends were family and the door was always open.  I was your typical child; the oldest of 2 children. In 2000, at 36 years old my mother was diagnosed with Breast Cancer.  At 11 years old, my world changed.  My brother and I were kept hidden from the majority of our mom’s diagnosis.

After the initial diagnosis, a couple years later the cancer returned.  My parents decided to get a second opinion.  Again, my brother and I were shielded, but our mother didn’t show any pain. She made it to every school and sporting event.  She was literally the strongest person we knew.  How does one go through Chemo and Radiation and still smile every day?

At 18, I was applying to college and starting the next chapter of my life.  But things took a turn.  My mother was losing weight and on oxygen all the time.  My mother planned my graduation party for me, 300 people later it was one amazing party.  One week later she passed away on June 29, 2007.  Years later I realized she only made it as long as she did for the party.  As much as that party was for me, it was also for her.

I went to college per my family’s wishes.  I saw a therapist once a week for 4 years.  Life was not easy, but I took what God handed me and made the most of life. In 2007, during my fall semester at college, I had this gut feeling to get tested for the BRCA mutation.  When I finally saw the genetic counselor, the doctor told me to wait until after I graduated college and try to live my life as best I could.  My mother wasn’t tested and we didn’t have any family history (2 or more people with Breast or Ovarian Cancer).  So I did what the doctor told me to do.  Four years later in 2011, I graduated college and landed an amazing job.  I honestly didn’t think I was going to graduate.  It was a rough 4 years but I did it!

In 2014, at 24 I started early screening: mammograms and breast MRIs as well as ovarian testing every 6 months.  Finally in June of 2015 I decided to get tested, the gut feeling was still there.  The doctors thought I was crazy but I didn’t care. Even if I didn’t have the genetic marker, I was still at a higher risk given my mother’s young diagnosis.  So on that day In June of 2015, I gave blood for the BRCA Mutation Test.  One month later I met with the genetic councilor to get my results: BRCA 2+.  Here was my first lesson I learned as an adult:  Self Advocacy.  I was my OWN voice and got tested.  I listened to my gut feeling even when the doctors told me I shouldn’t be tested.

After the realization of my mutation, a couple tears, and 9 holes of golf with my dad 9 (he never missed a doctor’s appointment), I had a lot to think about.  But one thing was for certain, I was relieved to know; knowledge is a powerful thing.   After many conversations and much support from my dad and boyfriend (now husband), we decided to do the 6 month screening.  When my husband and I got engaged in 2016, and our life was moving forward, I started thinking more about our future.  I realized that I didn’t want to live in fear and wait around for the test results.    So, we got married in July of 2017, went on an amazing honeymoon, and then we had a more serious conversation about our future:  do the surgery now or later.  Well, a couple months later in April of 2018 I underwent a prophylactic double mastectomy with tissue expanders and in November of 2018 I had my exchange surgery and received my implants.  The months and days leading up to the surgery were full or emotion:  I felt strong, happy, and smart but I was also scared.  I wasn’t sad about losing my breasts, I was relieved.

After I completed my exchange surgery, I decided I wanted to tell my story. So I posted my story on Instagram and Facebook.  I was a little nervous as I’m a very private person, only close family and friends, and my employer knew about the surgery.  I wasn’t afraid to tell people about my surgery, I LOVED telling my story.  It shows I wasn’t afraid to stand up for what I thought or wanted.  It shows I was brave and smart.  I wish I would have documented more of my journey.  The reason for not coming forward sooner was for the judgment society gives women. The BIGGEST judgement women have against other women – breastfeeding your children.  I didn’t want to hear the just wait so you can breastfeed your children and do the surgery later.  What if I waited and then I got Breast Cancer?

Here’s the thing – WHY does that matter how my potential future children get fed?  Shouldn’t the conversation be – wow you did something brave, you SAVED your life.  I was afraid for the feedback and judgement once I hit submit and then I realized: I saved my life, I’m a Previvor.  And guess what, all the comments were amazing, everyone was amazed at my courage and it started something that many of us weren’t talking about:  Testing.  But here’s the best part of my story:  I WILL be around for my children, my family, and my friends. And honestly that’s all that matters!  I wish what we knew back in 2000 what we know now about testing and preventative measures – it DOES and WILL save lives.  So many many lives.

By Erika McNulty

I discovered that I was BRCA1+ in November 2017 shortly before my 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