CJG Blog

Center for Jewish Genetics blog

Mommy, Where Are Your Nipples?

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“MOMMY, WHERE ARE YOUR NIPPLES?” – January 18, 2016

Karen Lazarovitz 

As published in Connect4Cancer in February 2015

“Mommy, where are your nipples?”

This is something I never thought I would hear coming out of my children’s mouths. This is my reality; and I promised myself when my journey began over six years ago, that I would always be honest with them. I respond with, “The doctors removed them along with my boobies and fixed them so that I would never get sick with breast cancer.” That answer satisfies them, for now at least.

                                               Jonah 4, Paige 2
At the time of surgery, Jonah 4, Paige 2                                                       

To those who don’t know about hereditary breast and/or ovarian cancer it makes no sense.  People aren’t able to understand that by removing healthy breasts and ovaries, I have reduced my chances of developing cancer to less than 2-5%.   If I had a dollar for every person that told me that I could eat right or exercise to avoid my risk of cancer, well, I would have a lot of money!  As a BRCA2 mutation carrier, I was given up to an 87% risk of breast cancer and up to 40% risk of ovarian cancer. That knowledge alone was enough for me to take drastic actions. Cancer was NOT going to get me.

A mutated BRCA gene cannot be repaired.  It cannot be fixed by eating right, exercising, or with natural remedies.  If you have a mutated BRCA gene it’s because you were born with it.  It has been ingrained in your DNA from the time of conception.  If either of your parents has the BRCA mutation then there is a 50% chance of passing it onto their children. And yes, males can be carriers as well.

September 2008, when my dad called to tell me that he was waiting for his results from a genetic test, I had no idea what he was talking about. He explained that it was a blood test to see if he carries a mutated BRCA gene which could be passed down to me and put me at an extremely high risk for certain cancers. We didn’t have any breast cancer in our family that I was aware of, and, although sadly, one of my cousins was fighting ovarian cancer, I didn’t see how it was connected. While I knew he lost his mother to cancer while he was in his teens, I never knew the details.

On December 27th 2008, at my own genetic testing appointment I received my positive BRCA mutation results.  Soon after my genetic counselling appointment, I learned from my father that he was able trace our family tree as well as health records from my cousin (who was fighting ovarian cancer at the time). I discovered that there was not only ovarian cancer in my paternal family tree, but breast cancer and skin cancer too (which we BRCA2 mutants have a slightly higher risk for). 

                                                Husband and best friend Joel
My amazing husband and best friend Joel 

Walking out of my genetic counselling appointment, hand in hand with my amazingly supportive husband, my decision was made. I was going to have a risk-reducing double mastectomy and hysterectomy with oophorectomy (removal of the ovaries), ASAP! 

Armed with my results, I got online to search for others who were in a similar situation. I was shocked to find almost no information or support about BRCA mutations.  I needed to talk to others who knew what I was going through. I needed to connect with others who were living with a BRCA mutation. I needed to bond with others who understood how I was feeling.

Panic set in and breast and ovarian cancer took over every waking thought.  Every ache and pain I felt I thought was cancer.  My breasts and ovaries felt like ticking time bombs, like they were plotting against me. I had to get rid of them. Right away! I felt that it was not a matter of if I was going to get cancer butwhen.  All I could think was, I`m going to get cancer and die young. I`d leave my husband a widower and my children without a mother. I was NOT going to let that happen!

On February 10th 2009, I had a full risk-reducing hysterectomy with oophorectomy. Once I recovered, I went back into the hospital on April 30th, 2009 to undergo a risk-reducing double mastectomy with the beginning of reconstruction (or, PBM; Prophylactic Bilateral Mastectomy as those of us in the BRCA community refer to it).  From the moment I woke up from both surgeries, my fear was gone. I never once questioned my decisions. I was so proud of myself! I was elated! I had taken control of my life and dealt cancer a pre-emptive strike! 

Going through with my surgeries and reconstruction was not easy and I was still looking for support which I wasn`t finding. Thankfully I found one girl who I connected with online, Teri Smieja, who also had a BRCA mutation and was going through the same preventative surgeries as me. It was such a relief to talk with someone who just got it. I felt like I wasn’t alone. It made all the difference during my journey and we have since become amazing friends.


                                                Teri Smieja
Teri Smieja and I - Founders of BRCA Sisterhood

We decided that we would start a private Facebook group for women like us who needed support. In December 2009 we started the BRCA Sisterhood. It started with eleven women and has since grown into the largest, most active Facebook group of its kind with over 4300 women worldwide and growing daily. It is a group that is filled with support and understanding. There is no judgment only love.  Whether someone is choosing surveillance, chemo-prevention or risk-reducing surgeries, there is someone in the group going through the same thing.

Through the love, support and appreciation of all the women I have met, grew a passion for advocacy. I realized that I could make a difference.  I felt something deep inside of me take over. The BRCA Sisterhood wasn`t enough, I needed to do more.

Six months ago I started a Montreal BRCA support group with a genetic counselling student who is studying cancer genetics.  The group meets once a month and allows everyone to have a face to face connection. It has been quite successful and I have received great feedback from the women who have attended.

I still feel that I still have so much to offer and share, which brings me to this, my next project, my blog.  When Connect4Cancer approached me about writing a blog for them I was touched and humbled and happily agreed! Being able to affiliate myself with such a fabulous organization will be a tremendous help in reaching a wider audience.

Whether you are dealing with hereditary breast and/or ovarian cancer or know someone who is I encourage you to make sure that they ask questions, educate themselves and reach out and ask for help. No one dealing with something as serious as Cancer should ever feel alone. I have and will always be an open book about my risk reducing surgeries so if you have any questions at all please don`t hesitate to ask.

Until next month!

Much love and health,

Karen

Xox

"We make a living by what we get, but we make a life by what we give." ~ Winston Churchill.

                                            Jonah 10, Paige 8
Jonah, 10 years & Paige, 8 years

Karen Lazarovitz, a BRCA carrier is an advocate for hereditary breast and ovarian cancer. Karen is the founder and Creator of the BRCA sisterhood on Facebook with over 4500 members worldwide and growing daily. She also started the first BRCA support group in Montréal. Karen shares her thoughts every month on Connect4Cancer and has been kind enough to share her posts with the Center for Jewish Genetics. Interested in learning more about Karen? Check out Facebook, Twitter, or Instagram!   

Facebook:   BRCASisterhood                
Twitter:   @KarenBRCAMTL
Instagram:   KarenLazarovitz_BRCA

There are many genes and mutations that lead to an increased risk for hereditary cancers, and the Center is here as a resource for all of these conditions, especially those that are more common in the Jewish community.

There has been so much information in the media recently surrounding BRCA1 and BRCA2 and how mutations on these genes can lead to an increased risk for certain cancers; there has also been a lot of information in the media about how mutations in these genes are more common in the Ashkenazi Jewish population, and what our community should do regarding that increased risk. If you are interested in learning more about the Center’s position on that topic, please refer to our statement  here.

If you would like more information on hereditary cancers or have questions regarding genetic testing, please feel free to contact the Center’s genetic counselor, Aishwarya Arjunan, at 312-357-4658 or by email at  AishwaryaArjunan@juf.org. You should also feel free to check out our  partners’ page, which includes information on organizations that specialize in support for these hereditary cancers and the risk for these hereditary cancers.

#menhavebreaststoo

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#MENHAVEBREASTSTOO – February 1, 2017

Leah Steinberg 

If we were to tell you that this year, “about 2,350 new cases of an invasive male cancer” were going to be diagnosed, which cancer would you guess that was? I bet your first guess wasn’t breast cancer, but that is actually the frightening statistic pertaining to this disease. And what’s even more frightening about this fact? “About 440 of those men diagnosed will die from their breast cancer.”

Can you believe that? Men are “dying by the hundreds” and there is so little information out there about what is going on. Why is that? And what can we do to raise awareness and educate the men in our communities and in our families about their risk?

Men Have Breasts Too is a documentary currently in production that is trying to do just this: raise awareness and create a community of men who are affected by male breast cancer. As one male breast cancer survivor says, “It was emasculating when I got diagnosed, and I think that is why I didn’t tell any of my friends.” In the video series produced in association with this upcoming film, “the faces of male breast cancer,” men speak out to empower one another and try to erase the stigma associated with being a man in what is usually a “women’s only club.”

One of the physicians interviewed in the film reasserts this mission by stating, “The numbers make you think about women, rather than men.” Another survivor says in the film, “[when the doctor told me my diagnosis,] I said, ‘you must have the wrong chart, I don’t have breasts.’” As we look at all of the awareness raising campaigns that are targeted only to women, it is not surprising that most men do not know they can get breast cancer. But what are the implications of this lack of knowledge for the men who are affected with this terrible cancer?

One man says in the documentary, “walking into the women’s center was a little intimidating...” And another survivor echoes his feelings by saying, “[the form asked] are you pregnant, when was your last cycle, etc. I filled out my name and address and the rest didn’t really apply to me.” Another male survivor says of his diagnosis, “I felt like a leper, my friends had never even heard of male breast cancer and it freaked them out.”

This documentary is produced in association with the Male Breast Cancer Coalition, which states on itswebsite, “Our goal is to have a world free of breast cancer.  Until we educate everyone, including the medical community concerning the need for more testing and clinical trials available to men, our mission continues to be an uphill battle. Knowledge is power and we want people to be informed.”

The Center agrees that knowledge is power. Please share these facts with the men (and women) in your life so that we can create a healthier and more informed community. Keep these statistics in mind when you look at your family tree and talk to your doctor about your family health history. Remember, BRCA mutations can be passed down through an individual’s mother or father, and these mutations can affect an individual’s sons or daughters. And check out the personal story of Lori Berlin, one of the producers of the film, to learn more about her family’s history with male breast cancer and hereditary cancer

Remember too that BRCA mutations can lead to an increased risk for more than just breast cancer. Check out the Center’s website for more information on hereditary cancer and what diseases you should keep an eye out for in your family tree.

Questions about hereditary cancer? Contact the Center for more information and we can help you find a genetic counselor that is right for you! Also check out the teaser for Men Have Breasts Too, and stay tuned for a film screening coming to a city near you!

Losing Both Your Parents to Pancreatic Cancer: The Silent Killer

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LOSING BOTH OF YOUR PARENTS TO PANCREATIC CANCER, THE SILENT KILLER

Roslyn Turner, Vice President, Rolfe Pancreatic Cancer Foundation, Young Professionals Board 

As part of pancreatic cancer awareness in November, I would like to share my personal story on how this insidious illness impacted my family. In 2001 I was like any other 16 year old – just got my license, my family celebrated my sister’s Bat Mitzvah, I was off to overnight camp for the first time… life was great!  After about a week away, I got a phone call that I had to come home right away- but no one would tell me why.  I walked into my house and knew something was wrong and moments later I was told my dad had cancer – he had Pancreatic Cancer.  I didn’t know anyone personally who had cancer. (I didn’t really know where the Pancreas was or what it did!)   I knew that people would get cancer and it was bad but a lot of people lived with it, from it.  They did treatments – it could be ok.  It was mid-summer, and in that moment I was thinking when does he start treatment?  Should we take a family vacation before he does?  But those thoughts ended quickly when I was informed that they found his cancer because he woke up one morning, eyes and skin jaundice because his body was shutting down.  There was no stage, there was no early detection of this – my dad was actively dying and only 3 short weeks after diagnosis, my dad lost his battle with Pancreatic Cancer.

Time passed, it got a little easier every day.  I graduated high school and was off to college.  In 2004, winter break of my sophomore year, my mom, sister and I took a family vacation. For two weeks my mom had what we thought was the stomach flu – she couldn’t keep anything down, not even water.  On New Year’s Eve we finally convinced her to go to the hospital and just days into the New Year, after many tests and a surgery, the doctor sat us down and said “You’re mom has Pancreatic Cancer and it has already metastasized to the liver.”  I think I laughed.  Sorry, wrong parent.  But I realized it wasn’t a dream. They always say you learn from experience and in my experience I thought we had days, maybe weeks – what do we do?  How do I do this again?  We prepared for the worst because with Pancreatic Cancer you usually do not detect it until it’s too late.  In November of 2005, just 10 months after her diagnosis, my mother also lost her battle with Pancreatic Cancer.

There I was, 20 years old with a younger sister and Pancreatic Cancer had taken the lives of both my mom and dad.  It was terrible, and devastating, but taught me that this disease is severely unknown, under researched and under funded.  Unfortunately, my experience is similar to so many others and has fueled me to want to make a difference. To this end, I serve on the Rolfe Pancreatic Cancer foundation board dedicated to funding early detection research that is critical to improving pancreatic cancer patient outcomes. With increased awareness and research progress, hopefully no other families will have to experience a similar tragedy.

To learn more about pancreatic cancer, please visit our foundation’s website.

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We are proud to announce that our Carrier Screening Program is open with our new medical provider Insight Medical Genetics (IMG). Visit our Get Screened page to learn more about our program and how to register!

CJG-Whats-In-Your-Genes

Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Be sure to check with your relatives for warning signs and assess your risk for hereditary cancers!

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more !