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
Dear Previvors,
Cancer is not going to wait for you to start your new health regimen. Cancer does not care if you just started a new job or are newly married. Cancer is not going to wait for you to have children. Cancer did not care that I was taking preventative measures and was proactively removing my breasts. It did not wait for me to find a convenient time and sadly, it’s not going to pay you a special courtesy.
I wish I had treated my positive BRCA1 test results like a cancer diagnosis. Instead, I waited too long for the ‘right’ time to take preventative measures and put myself at risk. Shortly after my 30th birthday, and just a day before my scheduled prophylactic (preventative) mastectomy, I was diagnosed with stage 3, triple negative breast cancer.
In my early twenties, I underwent genetic testing due to a significant family history of breast cancer. Testing revealed that I am a BRCA1 carrier. At that time, I was not ready for this news; I had just graduated university, was preparing to move abroad to begin my career and was not ready to think about the serious implications of this test. I promised myself then that as soon as I was secure enough in my career and had children of my own I would arrange to have a preventative surgery.
Shortly after receiving the results of genetic testing, I met with genetic counselors to discuss plans for future. I was given very high odds at developing breast cancer however preventative measures were not recommended to me at this time. Due to my age, I was unable to have mammograms and instead received annual MRI scans (a safer alternative). I thought that I was doing everything I should at the time and felt safe.
My mother was 41 years old when she was diagnosed with stage 2 breast cancer and my grandmother was 39. Due to the fact that breast cancer tends to develop earlier in later generations, as I approached the age of 30, I began to prepare myself mentally for a bilateral prophylactic mastectomy. In the fall of 2019, I met with two surgeons who would work alongside each other to remove and reconstruct my breasts. We scheduled my procedure for three months from that date and I began to prepare for this life-altering surgery.
Two weeks prior to my scheduled mastectomy, I discovered a lump, the size of a golf ball, in my left breast and had to endure six excruciating biopsies. This procedure took over an hour to complete and involved a doctor chasing solid masses within a cyst in my breast. This was the most invasive, horrific experience I have had to date. Just a day before my double mastectomy my surgeon called me to inform me that the biopsy results were positive for cancer cells.
When I received my diagnose I was in absolute shock. I felt like a ticking time bomb, living in fear that I would one day develop cancer and I had worked so hard to build up the courage to have an elective surgery. It felt like a cruel joke. I cannot begin to explain the frustration and regret that I felt and continue to feel. I had years to complete this surgery and did not act.
Since my bilateral mastectomy I have not had a moment to breathe. About a week after surgery, my boyfriend and I were rushed into family planning and fertility preservation as chemotherapy can cause infertility. I struggled to walk into the fertility clinic as I was still healing. I knew little about IVF so these procedures were overwhelming to me. My boyfriend was responsible for delivering 30 injections to me, each progressively causing me more discomfort as my ovaries grew. Days following my egg retrieval, I began chemotherapy and will soon receive radiation.
Each stage of this journey has been emotionally and physically challenging.
I didn’t have time to process my cancer diagnosis as my surgery was the following day. Following my surgery, I remember all I wanted was wanting to cry and scream and let out my emotions but I couldn’t because it would physically cause my too much pain. I felt trapped inside my own body and hated myself for not taking action sooner. I went from feeling empowered and optimist about my preventative surgery to feeling like a helpless victim. I grieve the loss of my breast, loss of sensation, and the ability to breastfeed every single day. I also fear that I may no longer have the opportunity to be a mother as IVF will have its own challenges in the future. I am terrified that treatment may result in secondary cancers or that cancer will return. These uncertainties weigh heavily on me.
If you are a BRCA carrier or someone with a high risk of developing breast cancer I can confidently say that you will never be ‘ready’ and no time will ever feel ‘prefect’ to undergo preventative measures. Nothing could have prepared me for a double mastectomy and I wish I knew that sooner. Waiting could be the difference between life and death. I strong urge you to undergo preventative measures (i.e. surgery) as soon as possible. A bilateral mastectomy is stressful and challenging enough without having to undergo fertility preservation and treatment as well. Take action and control before cancer does.
If you are found to be at high risk I want you to reframe how you perceive this diagnosis. Instead of asking yourself “Why me?” or thinking “ This is not fair!”, I want you to say, “I am thankful I know now.” If you are fortunate enough to receive a warning, act on it because some women may never know they are at high risk and others worse. I am grateful to have had the opportunity to prepare for my double mastectomy. I had time to say farewell and throw a ‘boob-voyage’ with my friends’ support, I had the chance to preserve a part of myself during a boudoir session, and I had the opportunity to educate myself and take my time in finding a surgeon I trusted. Since I took action, I had more control over loosing my breasts and this had mental health benefits.
Surgery will not be easy. Being a previvor means you will be tested emotionally and physically but having control will ease the process. Being a previvor means you do not have to rush fertility or compromise it. Being a previvor means you do not have to expose yourself to toxic treatments and put yourself at risk for secondary cancers. Being a previvor means your have a network of women at your access for support both in-person and online. I strongly urge you to take action while you can still be a previvor.
By Carmela Fuca
I became a Previvor on January 24th, 2020 when I underwent a prophylactic double mastectomy. I made the decision to have this surgery in order to significantly reduce my chance of getting breast cancer. My Previvor journey started in 2014 when my life as I knew it changed forever. Just two months after my wedding my Mother was diagnosed with ovarian cancer at only 53 years old. My life was turned upside down and shattered. My Mom was my best friend and we were extremely close so I was devastated when I received the news. She begun her fight with ovarian cancer by having surgery to remove the tumor which was wrapped around one of her ovaries and the ovaries themselves. After she healed from the surgery she then started chemotherapy to make sure they got rid of any traces left of the cancer. It was the hardest things I’ve ever gone through. Seeing her in the hospital recovering from a major surgery with tubes, i.vs and stitches, to then be sitting next to her in the infusion center where she would sit for sometimes 8 hours getting injected with chemo. It was devastating and I felt so helpless. Shortly after my Mom’s battle begun her doctors revealed that the cause of her ovarian cancer likely was due to a BRCA gene mutation. At the time nobody in our family had a clue what this meant. The doctors explained to us that one of my Mom’s genes was mutated and that mutation increases the risk of her to get ovarian or breast cancer. They told us that I could also have this gene if I was passed it on to me by my Mom. My Mom’s doctors urged that I get genetic testing to find out if I have the gene or not so I can be properly monitored. I went ahead with the genetic tests and was told I was positive for the BRCA2 Gene mutation in 2015 at the age of 28. I still had little idea what this actually meant and hadn’t fully grasped the importance of knowing this information.
My Mom and Dad urged me to get all the recommended semi annual checkups, tests and procedures. At that time I brushed it off and kept thinking “I’m not sick, nothing is wrong with me yet, I’m still young, why do I need to worry?” But my Mom persisted so her doctors started scheduling routine mammograms, breast MRI’s, ultrasounds and CA125 blood work to try to detect any potential threat in my ovaries or my breasts. My doctors suggested that with my BRCA2 diagnosis I should have my breasts, ovaries and fallopian tubes removed eventually after I was finished having children so I could significantly reduce the possibility of getting cancer. For four years while my Mom continued to battle, I did what the doctors suggested and got routine mammograms, breast MRI’s, ultrasounds and CA125 blood tests. The ultrasounds aren’t fun unless you’re having a baby, the mammograms hurt, and the breast MRI’s for me are the worst! I also live over three hours away from the hospital where I was being seen which meant lots of long trips back and forth for all these screenings. The anxiety of getting the results back from all these tests and procedures was horrible. Every time I had a mammogram they called me back in because they “saw something they wanted to get additional images of.” This literally made my my mind go to all the worst places of what it could be and I dreaded the thought of having to tell my Dad they found something. Fortunately the second round of images always came back negative. After keeping up with these checkups and tests for four years, I knew I didn’t want to have to go through this for the rest of my life. After watching the pain and suffering my Mom went through with years of chemotherapy, surgeries and hospital stays solidified my decision to have the preventative surgeries done. In my mind it’s not an “if” I get diagnosed with cancer, it’s a “when”.
My Mother supported and urged me to get the surgeries done and was thankful the doctors at U.C.S.F were able to discover this information so that it could benefit my health in the future. She was so thankful we found out about the BRCA gene mutation early enough for me to have time to do something about it because she didn’t have that chance. My Mom had a hysterectomy in 2004 and the doctor decided to leave her ovaries in because she was still fairly young at the time. Ten years later she was diagnosed with ovarian cancer. If she would have been tested in 2004 for the BRCA gene mutation and tested positive, they most certainly would have taken her ovaries. My Mother passed away on November 30th, 2018, and shortly after my husband and I decided that it would be best for me to get the preventative surgeries done as soon as possible. We didn’t want to live the rest of our lives with this fear and constant anxiety. Since we had come to the conclusion that we didn’t want to have children, we figured I didn’t need my breasts or ovaries anyway. In early 2019 I met with my surgeons and put the plan into motion for my total skin sparing bilateral mastectomy with reconstruction as well as a bilateral salpingo-oophorectomy.
In the summer of 2019 my doctors starting working on coordinating a surgery date that worked with both my breast surgeon and my plastic surgeon’s schedules. When they called me to say they had picked a date and that my bilateral mastectomy surgery would be scheduled for January 24th 2020, I was terrified. I’d never had a surgery before or even broken a bone. I was nervous to say the least, as I had no idea what to expect, or what exactly I had signed up for. They told me I would first have the double mastectomy as well as having expanders placed in my empty breasts to stretch my skin out to prepare them for the implants. A couple months later I would then come back for a second surgery to remove the expanders, replace them with silicone implants, do fat grafting from my stomach to fill in the gaps and the bilateral salpingo-oophorectomy. I didn’t like the idea of having 2 separate surgeries but I trusted that my doctors knew what was best for me. On January 24th, 2020 I became a Previvor after undergoing a prophylactic bilateral mastectomy.
I am a survivor of my predisposition to breast cancer. I’m patiently waiting for my next surgeries so that I can eliminate the huge risk of ovarian cancer that I’m carrying and get myself some more comfortable and nicer looking boobs. I’m looking forward to completing my Previvor journey. I’m so proud of myself for choosing to take action and not letting cancer dictate my life! Sometimes I still can’t believe I got the courage up to go through with it. I am so happy with my decision and I look forward to a long wonderful life! I know my Mom would be so proud of me and I’m sure she’s cheering me on along on this journey from up above.
By Jennah Terry
My mother was a lot of things- deeply caring, independent, fiercely loyal, inspirational, hilarious, and the best person I’ve ever known. At 15 years old, my world turned upside down when she was diagnosed with BRCA1 positive associated advanced ovarian cancer. Three years of fierce fighting later, she passed away. Just three years after we lost her, at 21 years old it was my turn to choose to be tested for the BRCA1 gene mutation, which came with a significantly elevated risk of breast and ovarian cancer. I was told I had a 50/50 chance of inheriting it.
The first emotion I identified with was fear. Fear of being sick and dying of course, but also fear of losing control of my life. I was afraid that by being handed a positive result I would be guaranteeing myself a life of looking over my shoulder, waiting for the moment I’m handed a cancer diagnosis. How will I learn to live in the moment with thoughts of losing my reproductive organs, chemotherapy, infertility, and illness floating through my mind? If I want children, do I have to get married by a certain age? Will I be living my entire life based on a countdown to inevitable diagnosis or preventative surgery?
My fears made me feel powerless at first. I thought getting genetically tested would make me feel like I had no control. I still remember lying on the floor of my kitchen the night I got the call from my genetic counselor that I was positive in late 2014, not knowing what my future would look like. I couldn’t process it all at the time, and put it to the back of my mind- I told myself that I was young, and I had time to think about it. I met with my genetic oncologist, who didn’t recommend I start screening for a few years, and so I continued on with my life.
A few years after my testing results returned, I started work as a Physician Assistant in the Emergency Department at a Boston hospital that is very closely affiliated with a major cancer institute. I started providing emergency care to oncology patients regularly, some of the loveliest and strongest patients I’ve ever met, many of whom were fighting breast and ovarian cancer. I felt privileged to be able to take care of these patients, but I also felt as if my job was forcing me to acknowledge the risk I knew I had, and started to think about what my future plan was going to be. I also was able to meet other women going through similar things as me through the non-profit The Breasties. I met young women who had gotten preventative surgeries, currently in treatment for cancer, living with metastatic cancer and that had lost loved ones to cancer. I learned so much from these women who have walked this path before me. To this day I am so grateful for their friendship and presence in my life. After months and years of reflection, I began to realize that choosing to be tested gave me power- the power to make my own decisions when it came to my health and my life. I stopped trying to run from my diagnosis and started to acknowledge and process my emotions.
Allowing myself to stand in my fear has taught me that fear is knowledge of a risk, but that knowledge can be turned into power. Because I know I’m BRCA1 positive, I have the ability to take action and reduce my risk on my own terms. My timeline will be determined by me, and me alone. In 2018 I began regular screening for breast cancer- I met with my genetic oncologist again and had my first breast MRI. I spent a day at the cancer center getting testing and waited a harrowing week for the results (they were negative). That was the week I decided to move forward with prophylactic surgery. I was determined to take control, and for the first time in a long time I truly felt I was ready.
The first breast surgeon I met with regarding preventative surgery was surprisingly discouraging- she voiced her concern that I would not be able to “live a normal life” without my breasts. It was days after that appointment until I realized that although that may be her opinion, it doesn’t have to be mine, and it frankly wasn’t mine. I define what is “normal” to me, and what is important to me in my life- and that is my ability to live a long healthy life with the people that I love, doing the things that I love. It is a life without breast cancer. I decided that I would not let my self worth or identity be defined by the presence or absence of natural breasts. I decided that yes it would be nice to breastfeed my future children if I am lucky enough to have them, but it is more important to me that they don’t lose me to cancer. And I thought about the person my mother was- I know that if she had the knowledge that I am privileged to have, she would have done anything she could have to save her own life. I found a new breast surgeon, one that not only impressed me clinically, but told me that she trusted my decision and that I understood the risks and consequences, and that it is my body and my choice.
And so in November 2019 just short of 26 years old I chose to undergo a risk-reducing bilateral prophylactic double mastectomy. It was not an easy road by any means- there were unexpected complications, and the journey to recovery continues. But I knew the moment I got home from the hospital that I had undoubtedly made the right decision. In retrospect, I’m so glad I didn’t rush myself into a decision immediately after testing- I needed those four years of self reflection to figure out what was going to be right for me. It’s not to say that risk-reducing surgery is the right decision for everyone- it’s not a decision to be made lightly, and every woman has the right and the power to decide what is right for her. It’s also not to say that I have outgrown my fears- I still become overwhelmed by the thought of my ovarian cancer risk, a journey that I have barely begun. But I know that moving forward I can trust myself to make the right decisions for me. I know that I do live a fulfilling and happy life, and I have every intention of making it a long one. I know that I’m not looking over my shoulder waiting for a diagnosis- I’m only looking forward.
By Ari Rossetti
I remember very distinctly the day that I was tested for the BRCA 1 and 2 mutations. I sat patiently in my OBGYN’s office, staring at the posters about birth control… pregnancy… STDs, but none of them referencing the decision that I was about to make. I was choosing to be tested for a gene mutation that could increase my lifetime likelihood of breast cancer to 72% and ovarian cancer to 39%. But to be honest, I was pretty calm about the entire process. Why? Because I was all but certain that my results would come back positive.
By the time I was 16, I had lost by mother, grandmother and great aunt to breast cancer. This sad legacy was something that I was acutely aware of for most of my life. By the time I was born, my mother was already a 7 year breast cancer survivor. At age 27, she was diagnosed with a Stage 3 invasive ductal carcinoma in her right breast. She underwent a unilateral mastectomy all the way down to the chest wall. Despite several attempts, she was unable to reconstruct and lived my entire childhood with one breast. One of my earliest memories was looking up at her as she dressed, a ritual that always included the placement of a breast form. Twenty years ago, women didn’t have the same options that they do today. My mother’s prosthesis was a cumbersome, beige, silicone “breast” (a generous description) that required her to wear a “heavy duty” support bra at all times. If she wanted to wear a normal bra, she had an oval-shaped cotton pad that (roughly) mimicked the shape of a real breast. But she made do. At the end of the day, the most important thing was that she was alive… she was a survivor.
Just one month shy of my 14th birthday, while snooping through my mother’s mail, I discovered a wig catalog. I assumed that it was trash and as I went to throw it in the garbage, my mother stopped me — “We need to talk.” I don’t know how, but I knew in that instant that she had cancer again and that everything wasn’t going to be okay. It’s been 15 years since I lost my mom and I have tears in my eyes typing that last sentence. But that emotion is precisely why I am writing this blog today. My mother’s story wasn’t in vain. Because of that loss, I am strong, I am proactive — I am a previvor.
My journey to becoming a previvor started the day I was tested for BRCA. I was all but certain that this simple blood test was going to change the trajectory of my life. Flash forward one month. I walked to my mailbox and there it was – my genetic test results. With the wad of remaining mail tucked in my armpit, I ripped open the envelope and quickly scanned the page. NO MUTATION FOUND. I stopped and looked closer. NO MUTATION FOUND. I thought for certain that I was reading something wrong as I unlocked my front door. I sat down on the couch and read it again. NO MUTATION FOUND.
I really wish I could have been a fly on the wall to capture my expression as I just stared at this single sheet of paper. For most women waiting for their results, there is a sense of anxiety… of waiting to hear if your life is going to change. As odd as it sounds, for me, it was almost worse finding out that I didn’t have BRCA. The same thought kept running through my head: What the heck is wrong with my family then? A BRCA mutation diagnosis is a starting point for many women. They assess their risk(s) and then decide on a course of action. But… I had already decided – a bilateral, prophylactic mastectomy. This would be an effort to prolong my life… a way to avoid the same sad fate as all of the women in my family. But what was I supposed to do now?
I was incredibly fortunate to have a wonderful breast surgeon, Dr. Eleni Tousimis of Georgetown University Hospital. Dr. Tousimis listened to me as I voiced my concerns, reviewed my family history and together we mapped a plan of action. We would move forward with a preventative mastectomy. Dr. Tousimis reminded me that only 10% of women diagnosed with breast cancer have a BRCA 1 or 2 mutation, and that even though I had not tested positive for THESE gene mutations, it was possible that I might have another. Or even more likely, based on my family history, I may have a gene mutation that modern science simply hasn’t discovered yet.
I remember feeling very calm walking out of that appointment, which is odd considering the circumstances: I was a 25 year old woman who had decided to prophylactically remove both of my breasts to hopefully avoid the disease that had plagued my family. But you know what… the most important thing that I’ve learned on this journey is that the scariest part of it all is the fear of the unknown. This is why it is SO important that we get informed, we know “our normal” and we continue to be our own best advocates. The more you know, the less intimidating the entire process is. And to top it off, when you can find a group of women like the patient advocates at the AiRS Foundation to support you along the way, you’ve got nothing to be scared of. For more information on how you can get tested for a breast cancer gene mutation, visit: beBRCAaware
By Allyn Rose
