The following is from a speech I made in honor of my family.

What I am here to offer you today is five generations that have been affected with cancer. We do not know exactly where the BRCA2 gene originated but I will share with you what I do know.

My maternal grandfather, Mike Koval, lived a prolific life. He farmed the North Dakota plains to provide a nice life for his wife and 12 children. In 1967 he was diagnosed with breast-cancer, four years later it took his life. This was a shock to his family and friends (if you didn’t know, men can get breast cancet too. About 2000 men/year in the US) but they had no idea what was in store. Two of his sons and five of his daughters would find themselves in a similar fate. One of those seven children was my grandmother, Francis. Now I assume that most of us do not have a lot of memories at the age of four and five. Studies actually indicate that people have no memories prior to the age of three. My first memories involve my grandmother’s struggle with cancer. I have memories as a child, driving with my mother to my grandmother’s chemotherapy treatment. I remember seeing her loose her hair and I was afraid. My mother assured me it was not contagious. How was she to know that we also had the same gene that was proliferating itself throughout our family. I was five years old when I attended my grandmother’s funeral. I remember the devastation on the faces of the seven children and husband that she left behind. I remember wondering, will my mom also die? I was afraid.

Four years later, at the young, invincible age of 29 - my grandmother’s daughter, my mother’s sister, Terri would hear a diagnoses her mother heard not so long ago – she had breast cancer. Five years later we buried a beautiful mother of two sons. The pain on the children’s faces is something nobody should have to witness. How could I describe it to you?
Now I look back and wonder …if the Dr. and my aunt had decided against a breast conserving surgery and decided to move forward with a more aggressive approach, would Terri’s life and death have been different? But how were they to know that their decision would ultimately cost Terri her life?

Two years later, another diagnosis rang throughout the family – another daughter, sister and mother heard the words that were now feared by everyone. My aunt Rosie had cancer. After the initial diagnoses, she had her left breast removed and kept her right breast. 5 years, 6 months later, the cancer reoccurred in her other breast. By the time it was detected, it had already spread to her lymph nodes. She fought for 4 more years before the cancer took her life at the age of 42. She left behind 2 daughters and a son.
Fear and sadness shook the family. Who was going to be next?
I was afraid that I would loose my mother like my cousins had lost theirs.

I think it is important to note, that from the initial diagnoses to the time of their deaths, the quality of their lives was less than optimal – to say the least. In both the cases I referenced above, the cancer matastized to their brains and they died a very long and painful death….while their families hopelessly watched.

As I look back, I now realize that a subconscious fear would awaken during certain milestones and moments of my life. I recall going through puberty and developing breasts. While my friends joyously celebrated purchasing their first bras, I wondered if and when my breasts would betray me as they had so many others within my family. By this point in my life, I realized that my mother had been mistaken, breast cancer was contagious, at least within our family, and I was afraid.

When I was 19 years old I went to a routine annual physical. The Dr. conducting my breast exam found something a bit suspicious, I remember feeling the blood drain from my face, was it already time for the inevitable to occur? I was afraid.

At the time, I did not realize that my mother was experiencing the same fear. Parents typically do not share their own fears with their children.
When my mother was 42 years old, a suspicious lump was found. She was tired. She was tired of being afraid. Right then and there she decided that regardless of the results of the suspicious lump, she was going to proceed with a mastectomy. Two Dr.’s refused the surgery; it was too radical and to extreme they said. She was not detured…only more resilient. She found a surgeon that had recently lost his sister to breast cancer and also had a strong family background of breast cancer in his family. Finally, my mother found somebody that understood and listened. Two months later she completed a risk reducing mastectomy with reconstructive surgery. The lump turned out to be benign…it was a wake up call that my mother gave thanks to. I also remember feeling a great sense of relief; I no longer had to feel afraid for my mother. This marked a turning point in my family history.
10 years later my mother’s Dr. referred her to a genetic counselor to explore the possibility of genetic testing. After weeks of dialogue and fact finding, the genetic counselor advised my mother not to get the testing. There were a few reasons given for this recommendation. However, I call it paralysis by the analysis. One of the reasons that were given is that there is a possibility that the gene causing cancer in our family is different from the gene being identified in the test (the test identifies 85% of the genes associated with hereditary cancer). Thus, giving a false ‘negative’. My response to that was…you have not lost anything you just remain where you are today…in the world of unknown. You have everything to gain and not much to lose.
We were fortunate that my mother had complications unrelated to cancer that prompted her to move forward with a complete oophorectomy regardless of the lack of the genetic testing.

Over the next 10 years we buried a few more of my mother’s aunts to cancer. I proceeded to get married and have a beautiful daughter and the most handsome of sons. My fears shifted….I was now afraid of prematurely leaving my children.

When I was 30 years old a friend of mine in the health care industry told me a bit more about genetic testing and how it was advancing. I was interested in pursuing the testing but where do I start? What does the testing entail?

Stephen Covey states that it is human nature to focus on the urgent items in our lives – Urgent means it requires immediate attention NOW! Urgent matters are usually visible. They press on us; they insist on action. We react to urgent matters. Important matters, on the other hand, that are not urgent require more initiative. Genetic testing fell into this category. We must act to seize opportunity, to make things happen. Genetic testing was important; however the urgent things in life were taking a priority (career, kids, husband, etc.). For the next two years, my quest for genetic testing would surface during my annual OBGYN visit. I would inquire; my OBGYN would get a confused look on her face and give me a phone number to “try”. The phone number would ultimately lead me to “nowhere” and once again the genetic testing would get placed on the back burner. On my 33rd birthday I decided that it was time to make this testing an urgent/important priority in my life. I had a very real understanding that I would turn 34 on my next birthday, the same age that my aunt died of breast cancer. I no longer could delay my quest for knowledge. I contacted my friend that was in the healthcare industry to see if she would do some research as to where I could get the testing done in my area. After doing some research she provided me with a name and number of a nurse practitioner that could do the blood test.
Blood test? Is that all there is to it? If it is just a simple blood test, why was it so difficult for me to be led down the right road?

October 18th of 2006, my blood was drawn. Tuesday November 14th I received my results, I was BRCA2 Positive and I was NO LONGER AFRAID. I was no longer afraid because the unknown was now known. I was empowered with choices! I no longer felt like prey waiting for the inevitable.
I remember sharing the information with my mother. It was a difficult conversation to have. We both cried. My mother cried tears a mother cries when something is wrong with their children and because she knew the gene came from her.
We cried for the people that had passed before us that were not privy to this information.

I proceeded to weigh my options and decided to take a 2 stage approach. The first phase was to move forward with a risk reducing mastectomy with reconstruction surgery. The next step was to address my extreme ovarian cancer risk, which I now knew I had.

February 22nd of 2007, I underwent my risk reducing mastectomy with reconstructive surgery. My mother was there holding my hand and I felt so thankful that I still had her in my life – for yet another milestone.
Four days after my surgery, my husband was driving me home. We passed by the Nurse Practitioners office that drew my blood and I asked him to stop. I went into her office, gave her a hug and thanked her for saving my life. I told her that she was my guardian angel.

A lot of people have asked me if my decision to have the mastectomy was difficult. The answer is no. The decision was not difficult. I knew the women in my family that lost their lives to breast cancer – I know that if they had been given the choice to see their children graduate high school, experience their first loves, get married, see their grandchildren, they would have done whatever necessary to make that happen. I feel sadness that they did not have the knowledge that I so gratefully have.

Now some of you may be interested in my sibling’s response to the information that we have the BRCA2 gene in our family. I have two brothers. My older brother is your typical single male, resistant to Dr’s. At this time, he has no intention of pursuing the test.
My younger brother, however, has a different perspective. He has children of his own. His initial question was, if I have the test and test negative, will I ever have to have this conversation with my children…I told him no, he would not. He then stated, I don’t go to the Dr. much but the next time I have any blood work done, I will include the test for this gene. I informed him it was not that easy. We would have to do some research to find somebody in his area that could do the blood test.

Then I thought to myself, it should be and needs to be easier. It is the year 2009 and we have the ability to personalize medicine and prevent cancer in patients that have the highest risk of enduring this horrific disease. I felt and still feel; somebody has to do something. Then I realized…..the somebody is me and all of you. It is our generation that is going to make the difference in terms of the availability of these tests.
Roughly 56% of my great-grandfathers children have been affected with cancer. It now is affecting the generations of his grandchildren and great grandchildren. The statistics continue to startle me. I recently learned that his last remaining son – who is a breast cancer survivor, had four daughters. EVERY SINGLE ONE of them has had breast cancer. That is 100% of his children!
Think about the five generations of my family, how this gene has impacted 5 generations. Think of how many other generations are going to benefit from this knowledge. Earlier this evening, it was stated that this gene impacts 5-10 % of the population – which equals 20-40 thousand cases each year. However, that number only is indicative of one generation. We all know that this gene is not isolated to one generation. It continues to proliferate itself. You have the ability to make a difference to generations and generations of people that have this identified gene in their family. I implore you, to ask the extra questions to respond to your patients needs. My children, your children and your patients children are going to benefit or not from the decisions that we make today. - Nikki

 Print This Page

I choose this title because it was the actual act of running that led me to the right people. I was 14 when I was told that my mom was sick. I was at sleep away camp and was told mom was in the hospital having a minor surgery. My dad didn’t want me to worry. The truth was she was undergoing a complete hysterectomy. At the age of 38, my mother, Shevi Reiss, was diagnosed with stage 4 Ovarian Cancer. No signs, no symptoms, not a single person in the family prior to her was sick.

How then was it possible, that she was so sick? At the time, I didn’t really know what that meant and always assumed she would be just fine. I knew cancer was bad, but I had hope. I mean as a child when you get sick you go to the doctor and they give you a prescription for something and you go home. A few days go by and you get better. That was all I really knew about being sick. I learned much more about it in the coming years. Mom wasn’t just sick she was dying. Ovarian cancer, which I refer to as “the silent killer”, was taking away my mothers most beautiful years.

It was threatening her future dreams of seeing her 2 daughters through all the wonderful stages of our lives. Mom fought for just about 3 years until ovarian cancer ultimately delivered her fate. Mom died on Rosh Hashshonah 1990. They say only really special “the chosen” die on that day. I would have rather her not be so special. She missed high school graduation, college, my wedding, my firstborn, my second born and the chance to be the most wonderful grandparent alive. Now, she is missing her daughters’ triumphant decisions to live beyond age 38!

I was told something about a gene test about 8 years back. Every time I inquired about it to my gynecologists I got the run around. Either I was given a phone number to call to no avail, or a blank stare. There was even one who told me she had no idea what I was talking about, but would look into it for me. That never happened. Time passed and I was raising two children living in Long Island buying my first house and living the dream. Genetic testing wasn’t always the first thing on my mind. I guess I figured one day someone would know what to do. I trusted my doctors and if they didn’t know about it well then maybe it didn’t really exist. But, I have to say always trust your gut because deep down inside I knew I had to pursue a bit harder. Plus my dad kept pushing for it as well. I was stuck and didn’t know where to turn? It was a challenge and struggle to get to the right place. Raising two young children became my focus and other things took a back seat to them.

I decided the least I could do was live healthier, so I started running. I had never really ran before!! But, I felt the need to run. And so, I decided to tell everyone I was going to complete a marathon in the name of my mother.

Just in case you don’t know this, when one says they are going to run a marathon, unless you break your foot, your doing it. So I began to train. I met a girl named Heather at a mutual friends’ child’s birthday party, whom I had met when I first moved into the neighborhood, but we didn’t become friends then. We were both admiring how dry our hands were and got on the topic of running. See, we both ran outside in the dead of winter and our hands were dry.

She asked me how much ran and I told her I was in training for a marathon. She said,” me too”. And here is where the title comes in. We began to run at 5Am religiously together. She had one rule. No talking while we run. I obliged and the first morning we talked the ENTIRE run through, and thus, she saved my life. Not only had our paths crossed before, but she knew the one piece of information that would change my life forever.

After hearing the story about my mom, she told me about a doctor who spoke at her friend’s house about a gene test. She urged me to call him that same morning. I never even knew the name of it before that day. When I got home that morning I made the call to a Dr. Jonathan Herman. I made an appointment to come in and within a week was sitting in his office. This very passionate kind man introduced himself to me and told me I was in the right place. We talked about my mom and her family history and found out things I never thought would be important.

For instance, my mothers paternal Aunt died of breast cancer at age 70. AHA!, the link , my moms dad’s sister had breast cancer. But what did that prove? It proved that through my grandfather, my mom got this gene which predisposed her to breast and ovarian cancer. It also made cancer appear to have skipped a generation because it came through my grandfather’s line. So, since my mom was so young and her aunt did not yet have cancer, she was the first. Correction, she was the youngest. So, Dr. Herman suggested that my sister and I take the Multisite test.

He said it will help determine if a broken gene that connects breast and ovarian cancer has been passed down to us. Okay, so what next? I figured this must be some great big tadoo of a test. Wrong again, go into the back room and give blood. What? Give blood? It’s a simple blood test? I couldn’t believe my ears. I have been searching for a test that can save my life that takes 3 seconds to do, and not one single doctor ever knew about it. I was floored, frustrated, relieved, angry, all of it. But of all the feelings I had, thankful was the most dominant!! It was supposed to take 2-4 weeks for an answer.

I took the test May 2, 2007 and received the results on May 14, 2007. Dr. Herman informed me that I was BRCA 1 positive. My sister also came back positive. What that meant was that we had an 87% chance of breast cancer and a 44% chance of ovarian by age 70. Age 70, wait a minute I am only 33, and mom was only 38. He advised me to come in and discuss my options. I did so the very next day. I already knew what I had to do for me. I made the decision to have a prophylactic double mastectomy with reconstruction and a Salpingo-Oopherectomy.

My sister made the same decisions. It was the most empowered I had ever felt in my whole life. It was the one decision I knew was 100% right for me. Now, I was going to see my children through all the amazing stages of their lives. Graduations, wedding , births and becoming a grandparent were all real possibilities.

On June19, 2007 I underwent my first of many surgeries. I had a wonderful team. Dr. Gordon did the mastectomy ( I was the last patient of his career), Dr. Leipziger did my reconstruction (beyond amazing, he put me back together) and Dr. Herman my oopherectomy (the man is a walking angel).

I thank Dr. Herman for the great news!! For spreading the word and saving lives. I thank him for giving me the opportunity to make a decision that would change my life. It was truly a gift. I no longer worry that I too will be pray to my mother’s fate. My prophylactic double mastectomy revealed an in-situ breast cancer. It was so early, but today, instead of writing this article and recovering from breast cancer.

I’m writing this article recovering from surgeries I chose to have in order to save my life. I am no longer running scared.

Tiffany Reiss Seely

 Print This Page

My eighty-four-year old mother is a survivor. She survived four-and-a-half years in the Nazi death camps, including two in Auschwitz. She survived breast cancer, which is now forty years behind her. Today she lives happily with my father in West Palm Beach. This year she will celebrate the birth of her first great grandchild and she will celebrate the wedding of her grandson, the third wedding of a grandchild in the past three years. I’ve always taken her advice to heart: “Save a life, and you prolong your own.”

I didn’t really know a great deal about BRCA genetics until I found out I had the BRCA2 gene almost two years ago. The events moved quickly after that: I underwent a bilateral mastectomy and reconstructive surgery on August 31, 2007 and in November 2007 I had an oophorectomy.

My story is about the contributions of many people who helped me save my life. Now I would like to use the knowledge I have gained to help others save their own lives and the lives of their loved ones. When I first learned about the BRCA gene, there was dramatically less public awareness about its existence and implications. Even the knowledge and expertise of the medical community was far less ubiquitous.

“Should I be tested?” I certainly wasn’t the first person to ask herself that question, and I won’t be the last.
Lucky for me, I had an informed champion. Dr. William Goldman, a close family friend, became concerned about my family history. He insisted I see a geneticist. He was passionate about the importance of testing. He kindly insisted on helping me find, through his extensive research, the best doctors.

“What steps do I take, now that I am positive?”
Dr. Marc Harvey, my gynecologist and friend, was extremely supportive and also helped guide me to my ultimate decision. Doctors Goldman and Harvey agreed I should an “expert” opinion from Dr. Mark Citron, an oncologist. All doctors concurred that “I should get the cancer before it gets me.” I made up my mind. It’s a decision I will never regret.
As Americans, we are fortunate to live in today’s age of information, where answers to questions about BRCA are a Google search away, where testing has become mainstream, and where prophylactic measures are readily available. For me, the decision to undergo a mastectomy and reconstruction was simple. I CHOOSE LIFE OVER UNCERTAINTY. Of course there were some who questioned what I considered to be highly personal - and pretty obvious – decision. But my loved ones—my parents, children, brother, boyfriend, relatives and friends—all saw the choice in the same stark terms and were immensely supportive.

Today we have choices. Today, we have reconstruction techniques that produce beautiful breasts of any size or shape to suit the most discriminating tastes. And today we have medical advances that enable us to live long and prosper, defeating a disease that only a short time ago could have killed us.
My plastic surgeon, Dr. Tracy Pfeifer, helped make a very difficult experience much more comfortable for me. Highly skillful and extremely kind, she carefully explained what to expect from my surgeries and she even assisted me with health insurance issue.

Nearly two years later, I am a whole person with no regrets. I thank g-d everyday for the opportunity to live life fully without hesitation or concern. Beyond doctors, my support system included my devoted daughters and caring boyfriend, my relatives, my friends and friends of friends. If you are contemplating going though this, you too will be amazed at the outpouring of support and love you will receive. It will make you brave.
Now my mission is to inform others about the BRCA genetics and break down information barriers and misconceptions that still exist.

My three daughters have been tested for the BRCA gene; two tested negative and my youngest tested positive. Armed with information, we will take the steps necessary to assure that hers is not just a long and healthy life, but a robust one as well, filled with children and family.

TELL A FRIEND, TELL A RELATIVE - - Save a life, prolong your own.

Thank you Dr. Herman, for enabling BRCA gene patients to tell their stories here and help others.
Linda Blatt, Melville, NY

Q: How did you learn about testing? Who told you about it?
A: Dr. William Goldman is a pediatrician in Virginia. Upon learning about my family history he suggested I take the BRCA test.
Q: Was there some other family member or members with cancer or was it just your mom?
A: My mom had breast cancer. My aunt (my mom’s sister) died from breast cancer. My Mother’s first cousin had breast and ovarian cancer. My mother’s grandmother died from breast cancer.
Q: Why do you say the medical community expertise was not where it is now?
A: There was no support that I was aware of for prophylactic surgery at that time and there was no sense of urgency to have that surgery done.
Q: Why do you think that non-family members questioned your decisions?
A: People who are uninformed don’t understand the ramifications of being BRCA positive, therefore think it’s too drastic a step to have the surgery.
Q: Where, when and how did you tell your mother and what did she have to say about your decisions?
A: My parents were in NY attending my oldest daughter’s wedding. Several days after the wedding, Dr. Marc Harvey called with the results of my blood test. I was BRCA 2 positive just as my mom. My parents were still in town so we had a very long conversation. My mom felt an immense amount of guilt. She wondered if my brother and all her grandchildren would also be positive. The last emotion I wanted my mom to feel was guilt. By taking this test she had given me the gift of life. I explained it was a blessing that she had taken the test and in the end had possibly saved the life of her daughter and grandchildren. I thanked her over and over again for taking the test. Approximately four weeks later I informed my parents that I had made the decision to undergo a prophylactic mastectomy and reconstructive surgery. Initially, they were frightened for me to undergo the surgeries. However, I reassured them that the surgical techniques had changed drastically in the last forty years since her operation. After explaining everything very carefully they understood and were extremely supportive.
Q: You mention insurance issues. Anything we can learn from what you dealt with?
A: If I had to do it all over again, I would have stayed within network. There are many wonderful doctors that would have taken my health insurance, which would have made matters much less stressful for me.
Q: What are your three daughters up to?
A: My oldest is employed in the fashion industry. She is married, living in FL, she and her husband recently found out that they are going to have a baby. My middle daughter also lives in FL with her husband. She is an interior designer. My youngest child lives at home with me and is studying to become a holistic nutritionist.
Q: How are they dealing with it?
A: To them at this point it is a non issue. We have all moved forward.
Q: Any words of wisdom from your youngest?
A: My youngest daughter understands that she is going to have frequent check ups, mammogram’s & MRI’s over the course of her lifetime. However she looks forward to a cure for cancer.
 Print This Page

My childhood was anything but “normal”. When I was 11 years old and my sister was 7 years old, my mother was diagnosed with breast cancer. I really wasn’t sure what that meant but for the next 2 years, I watched her go through surgeries and many treatments that made her sick and changed her personality. When I was 13, she passed away in the hospital after being in a coma. She was 36 years old. It wasn’t until that time that I learned about my family history. My grandmother and aunt had both had breast cancer but were lucky enough to have survived. My father spent the next several years researching and reading up on the newest treatments and preventative measures on the market for breast cancer. He casually suggested at this time that my sister and I consider going to Sloane Kettering to participate in a study. The study was focused on children that lost a mother to breast cancer. My sister and I never pursued it as I was 14 years old and she was 10 years old. It seemed like something that happened to our mother would never happen to us.

After my mother’s death many things happened in my life. I finished high school, graduated with a bachelor’s degree from college and attended graduate school where I received my Masters of Social Work. I met my now husband when I was 27 years old. We got engaged and married and began planning a family. In between all of this, I went for yearly mammograms and sonograms and held my breath until the results came. I was so thankful every year that went by that I had no signs of lumps in my breasts.

In March 2006, my husband and I were ecstatic when we found out that I was pregnant. My obstetrician was Dr. Jonathon Herman. During my first visit with him, he asked about my past including my family and came to realize that I had a very strong history of breast cancer. Dr. Herman discussed with me the idea of BRCA testing after pregnancy. I was hesitant. After careful thought, I realized that I wanted to take the test for my future children. I felt responsible to know if I carry the gene and the likelihood of passing it down.
I initially felt that if I tested positive, there was nothing that I could do except wait. Dr. Herman reassured me that there were options, choices, such as surveillance, medications and if I chose mastectomy and breast reconstruction. I chose to find out during my pregnancy.

As expected, I tested positive for the BRCA 2 gene. I say expected but it was still extremely difficult to know for sure that I am at high risk for breast cancer. After much discussion with my wonderful husband and Dr. Herman, I decided to have the breast reconstruction done after my son was born.

My son was born in November 2006 and I met with plastic surgeons and breast doctors during my maternity leave from work. All confirmed that I was making the right choice. On December 21st, 2007, I had a double mastectomy. The breast reconstruction was done on March 19th, 2008. I look back on both these surgeries and I feel very lucky that I went through them. I feel as though I took control of something that made me feel so out of control for so many years.

My son is now almost 2 years old. My husband and I will be trying for a second child. G-d willing, after the birth of our second child, I will have my ovaries removed. The BRCA 2 gene is also linked to ovarian cancer and although none of the women in my family ever had ovarian cancer, I don’t want to take a chance. My goal in life is to walk my son down the aisle at his wedding and grow old with my husband. These are things that my mother never got to do and I want to do this in her honor.

PS – I wish she knew she saved my life. Maybe she does.

 Print This Page

I went in for a prenatal visit today to check on my baby. While my doctor was performing an ultrasound he asked me what I thought the gender was. Since I am only 12 weeks, we both knew it was to early to determine the sex. He was interested to know how I would feel if the baby is a girl. I know what he knows. If it is a girl, my baby would have a fifty-fifty chance of carrying a BRCA mutation. I told my doctor that I don’t dwell on it at all. He was a little surprised, I think. I explained that I feel fine with the knowledge that I could pass the Breast Cancer gene down to her. Next, he asked when I thought I might explain the entire thing to her hypothetically. Of course, I would tell her about it. Maybe when she was in her teens. Maybe I wouldn’t go into the details of my surgery. The details of my risk reducing mastectomy and reconstruction would wait till later on. But I would tell her about I and how lucky I am that this test is around. I know that I would absolutely tell her. She needs to know this piece of information about her mom and about her family. I want her to be old enough to understand what it all means. I also want her to be comfortable with her body at that point. Later on I will go over what options are available to her. I am sure by the time she gets there will be improved treatment options compared to today. If this baby is a girl, my husband and I will have to talk more about these things.
But for now, I am just so happy to be pregnant.
When should someone tell their daughter about BRCA in the family? I don’t think I could answer the question today. My husband and I will see when it the right time for my daughter. We will have to take many things into consideration before deciding.

 Print This Page

I was hesitant to write this my story for various reasons. However I have to look beyond myself as this is an opportunity to do something for you. The past few days have been a whirlwind of emotion following the phone call Monday late afternoon with the doctor confirming that I indeed tested positive with the broken BRCA gene.

My husband and I have been living in slow motion. How do you react to finding out such a thing? “I’m positive???” I asked. I turned to my husband and shook my head in acknowledgement. “I am positive,” this time repeating the words in the affirmative. My husband was waiting there, as I was, hoping to breathe that anticipated sigh of relief. Hoping the words of the doctor would be, “Stacey, the test was negative.” But those were not the words that reverberated in my ear.

I asked the doctor almost mechanically, “Okay—so now what?” The doctor responded, “I am still at my office. Come with your husband now so we can talk. I can help” “Fine, we’ll be right over,” I may have responded, feeling somewhat numb. “Come over now,” I questioned in my mind. What about reality? That slight glitch called–the babysitter? How will I get a babysitter on such short notice to watch my two little ones? “Call your mother,” my husband suggested. “I can’t call Mommy. She’ll ask me why I’m crying.” Okay let me get myself together. I can’t cry, I can’t cry.”

This all came about because of a discussion my father had in passing with a fellow colleague. My father had somehow mentioned in the course of a conversation that many close relatives died of cancer. This colleague immediately suggested my father be tested for the broken BRCA gene. The what? To me, what only was just a few days ago perhaps an encyclopedic, unknown, trivia term has now come to occupy my mind most of the day. The truth is, although I can never express it, my husband and I are eternally grateful to this “in-passing” colleague. It was his suggestion that my father be tested which led me to be tested as well.

Two weeks after he tested positive for the broken gene, my father took my siblings and myself aside and asked us to be tested. In retrospect I feel selfish for my lack of commiseration for my father’s predicament, his main concern like always was to protect us by finding out if he indeed was a carrier. I knew after some prodding that as a child of a carrier, we all individually stood a fifty-fifty chance of being positive as well. What would that mean? Fifty-fifty for what? When I discovered that the results could mean being at a much higher risk of getting breast, ovarian or even pancreatic cancer, the thought of all this made me feel like I swallowed a boulder. However, despite this, I knew what I needed to do. I had to get tested. If I have it, then I could at least try to do something about it.

After discussing the thought of being tested with my siblings, not everyone shared my similar feelings. Their responses were the following: “I don’t want to be tested. Who says these tests are always accurate;” or “I don’t want to know something like that, I’ll just make sure that I have regular mammograms and MRI’s if necessary.” Their arguments sounded somewhat reasonable. I even started to doubt my original feelings of being tested. I asked my husband to ask a prominent Rabbi in the community what we should do. When my husband recalled the conversation he had had with him, he recounted, “When I asked him whether or not you should be tested, he looked at me with a curious glance and then asked me what my question was. Is there a reason you think she shouldn’t be tested,” the Rabbi asked him incredulously. “Of course she should be tested,” he confirmed. Now I felt comfortable with my decision. When my husband returned home from work later that afternoon, I went to the doctor’s office to be tested. Once again, we went over all the details. He told me, “less than 2% of the general population will get ovarian cancer by age 70, 27-44% of those with a broken BRCA gene will get ovarian cancer by age 70, 20% of them will survive, etc.” The words echoed in my mind for two weeks as I waited for my results…

It’s been four days now since I found out this news. Honestly, at times I feel sad. Thank G-d I have been healthy all my life. I now realize that I could be walking around with a ticking time bomb inside of me. I can’t get sick. I’m young–my children are young and they need me. I sometimes feel anxious. And sometimes I feel strong. I need to take charge of this as best I can. I have to eat healthy. I need to exercise. Perhaps, I’ll even get into some of that holistic stuff. I know that most of all, what will help me pull through all this is prayer. I need to pray. G-d help me be healthy. I want to care for my husband and my children and I want to have more children. You have given me such a special job that I don’t always appreciate as much as I should. And G-d, I do see that this truly is a blessing. I have a greater risk, a silent potential that lay dormant, and now, I can, with G-d’s help, attempt to do something about it. Thank you for sending me the proper messengers. Now I know more about what my future could bring and hope to take the necessary precautionary measures to protect myself and my family.

Tracey

 Print This Page

Please don’t read my story and feel bad for me. I want you to feel how I feel; lucky and empowered. My cancer story began when I was 15 years old. My beautiful, young mother was diagnosed with breast cancer at the ripe old age of 38. I was scared and embarrassed. My mom did what she had to do; surgery and then went on with her life. Unfortunately, just 6 ½ years later, my mom was diagnosed with ovarian cancer. My vibrant mother succumbed to her illness three short years later. She was only 48.
So that’s how my cancer story starts. Now let’s talk about how it ends…..how I made it end. It’s been over 18 years since my mom passed away. Over those years, many more family members were diagnosed with cancer. My dad, just 59, pancreatic cancer. He fought hard, but passed away at 62. My maternal aunt, ovarian cancer. She too, fought hard but passed away almost 5 years after she was diagnosed. One paternal aunt, breast cancer, another one ovarian cancer, a paternal uncle now with prostate cancer. I am glad to say that the three of them are doing great and are well.
In 2005, I finally decided to be genetic tested. I was tested for the BRCA 1 mutations and the BRCA 2 mutations. Of course, I wasn’t surprised when my blood test revealed a mutation in the BRCA 1 gene. At least now I knew why so many family members were getting sick. The first part of my decision was easy. I had a wonderful husband, 13 year old twin sons and a 10 month old daughter. I was lucky! And empowered! I knew what I had to do. I immediately had a preventative oophorectomy and cut my chances of ovarian cancer almost down to 0%. Not to 0 but almost. However, the next part of my decision wasn’t so easy.
I started going to a breast surgeon in 2006. Every 4 months I would see her for a clinical exam. Once a year, I would have a mammogram and sonogram and 6 months later an MRI. With each test I prayed…..please don’t let this be the one that finds breast cancer. I was lucky. All of my exams, mammos, sonos and MRIs were normal. Do I just keep waiting for the inevitable to happen? But then, this past summer, my 43 year old cousin who had just buried her mom 4 months earlier, was diagnosed with breast cancer. Now, I knew what I had to do!
This is what you need to know. I had a preventative, double mastectomy and breast reconstruction 6 days ago. I am home from the hospital for 3 days now. I am tired and uncomfortable. My family has been amazing. My husband has been taking incredible care of me, as have my three kids. So how do I feel now? I feel lucky, empowered, and fortunate!
 Print This Page

Get the Flash Player to see this player.

My colleagues tell me it takes a lot of time and a lot of effort to do it! So, why do I do what I do to identify and counsel patients at risk for hereditary Breast and Ovarian Cancer? Because it saves lives!
I have practiced ObGyn for over thirty years. I have cared for a handful of patients, maybe six, who were diagnosed with and died from ovarian cancer. Three of them must have had Brac mutations and could have been identified and I could have saved them and their families from a brutally awful death. I know this now from the current availability of testing which was not available in time for these women. I now care for their sisters, daughters and sons and I can be proactive in testing them and doing things to improve detection and prevention. Counseling and testing saves lives. It’s proven.
Nothing in my specialty is worse than finding ovarian cancer in a patient. It is usually spread throughout the pelvis and I know that despite the best of care in treating this disease, we do not cure ovarian cancer in most cases! But if I can identify those at greatest risk and offer them treatments that can save their lives they are grateful beyond imagination.
Fear! I have spent many years caring for women who watched their mothers die at young ages of Breast and Ovarian cancer. They live with the fear that they will contract this cancer but they don’t know when. Tracing BRAC positive families also allows me to identify those women who do not carry the gene and therefore are at normal or slightly increased risk for developing these diseases. Finding negative test results in these patients is a great relief. It gives these women a chance to have greater control of their medical destinies.
Hereditary Breast and Ovarian cancer is everywhere if you look for it. Remember, I have unsuspecting patients who do not have first-degree relatives with breast cancer because the genes may pass through their male relatives. So unless physicians are asking patients about family history, they will surely miss the opportunity to have an impact on their patient’s lives from these diseases. That is why my staff and I talk to all patients, friends and relatives about the availability of BRAC testing.
As I get more involved in testing I have been getting more involved in the impact of test results on my patients and their extended families. I have gotten to know these families and feel a real commitment to bringing them the most current information to help them take control of their health and future.
I am proud to help patients and doctors “Learn about HBOC.”
 Print This Page