A little bit about Robin

I was born in raised in Alabama and am proud of my Southern roots. I love to write and share life experiences, thoughts, and crafty ideas about interesting things past and present. Welcome to my neck of the woods. Sit down and swing a while.

Friday, July 12, 2013

Why I Forgive Angelia Jolie for her Past Indiscretions and the Importance of BRCA1 and BRCA2 Genetic Testing

The BRCA1 and BRCA2 Cancer Gene, what is it?  Well, the textbook version is this:
BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer. A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation. Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.

There is s check list of things you go through to see if you need to be tested for the gene. Some cancer is hereditary, some hormonal or environmental. The BRCA1 and BRCA2 gene is an answer to the question, are your chances higher for ovarian and breast cancer because of your genetic background?  So just because Angelia Jolie waltzed in with Bratt Pitt, her long legs and mohawk babies,  announced she had the gene and a double mastectomy does not mean you need to run out and get your boobs chopped off.  She passed a very specific checklist that pinpointed this gene to her family history of breast and ovarian cancer and was smart to check it out. She is educating us and helping prevent cancer for her daughters  and other people's daughters in the future. This is a good thing.  Thank you Angelina, I can now relate to one of your many causes. For more on BRCA and answers to your questions you can go here: http://ww5.komen.org/BreastCancer/InheritedGeneticMutations.html

My Story is this:
The first time I heard of the BRCA gene was from one of my very best friends Dr. Sarah Merritt.  Sarah and I grew up together in Huntsville. She was in my wedding and continues to be a close and dear friend of mine. To get the timing right before I was married or barley knew my husband, Sarah’s sister Mindy found out she had a rare form of Cancer.  Sarah, the book smart and progressive doctor that she was becoming at the time, and now is, started researching breast cancer and such to find clues linking to her sister Mindy.  Sarah ran across an article about the BRCA gene, a discovery that had only been introduced in the early 90’s. What was interesting about this article is that it said this gene is very prevalent in the Ashkenazi Jewish population from Eastern Europe.  Well that is my family tree on my mom's side, and my mother had a breast cancer in her 40’s and a hysterectomy in her late 30's.  Sarah wanted to bring this to my attention, maybe I should consider looking into that one day even though my dad was not Jewish.  It turned out her sister Mindy did not have the gene.  If you know the Merritt’s just by looking at them Easter Europe is not an option at first glance, but about 2.5% of caucasian Non-Ashkenazi Jews have this mutation so it was smart for them to check.  Mindy’s cancer was just another type of Cancer that we still to this day fight, walk and ride bikes to raise money to help find a cure.  Mindy lost her battle with cancer a few years back and there is not a day that goes by that Sarah’s sweet sister, also a mother and wife, does not cross my mind.  It is because of people like her that the fight for a cure continues.  

In saying that I have known many people who have fought and lost the battle and many who have won.  That is in God’s hands and his reasoning will always be an enigma to me. Where my story begins is when my maternal grand mother, Manya, at age 11 came over on the boat from Lithuania to Ellis Island with her family. My maternal Grandfather, Henry, was born in New York City. His family came over way before his birth, but were also from Lithuania. We are in every way Eastern European and Ashkenazi Jews.  There is some cancer in my family and one or two cases of breast cancer on my Papa's side. Sarah’s tip to me never left my mind.  I just put it in that pocket where you stick things and pull them out later.  About a year and a half ago I was seeing my doctor and she suggested at 35 I get a mammogram because of my family history.  I followed directions almost right away.  This was important and relevant personally for me at the time. A week after my first mammogram I got the letter.  Something was not right.  My heart dropped.  Here it is I thought, the dreaded cancer, I put the cancer scare in my pocket and now I was going to have to pull it out.   Long story short I did not have cancer.  I have something called Atypical Hyperplasia. 
You can read about it here:
After two Lumpectomies and a couple pathology reports they cleared me.  I now have a breast MRI once a year along with two mammograms a year. My breast surgeon Dr. April Maddux urged me at that time to get the BRCA gene test because of my ancestry.  KNOWLEDGE IS POWER she said. She questioned, what if you have a daughter one day, educate your nieces, EDUCATE.   The catch is my mom had to take it first.  If she had the gene then there would be a 50/50 chance I had it.  Also the test is expensive.  In some cases it is as much as $3,000.00.  

(But I found out recently that is changing so don’t go freaking out if you are thinking of doing this.  It was covered for us when we finally took the test and for most with insurance it is only 200 or 300 dollars now.)  

When I told my mom about it she said she did not even know we were Ashkenazi Jews.  Which is so my mom.  The where and who and how of the past does not make a difference to her unless it is positive or relevant to the present. She is a free spirit of sorts.  Since we are basically from the south and she grew up in a southern town with a very small Jewish population the question, where do your Jewish people hale from, never came up.  The first time I heard of an Ashkenazi Jew is when I went on the Jewish dating site Jdate when I lived in Atlanta. What kind of Jewish person are you was actually a question when signing up.  There were check boxes and everything.  I had to call a sorority sister to figure out what kind of Jewish person I was.  Obviously I was not Jewish enough for Jdate. That experiment never worked out for me and marrying a Catholic boy proved that I am a free spirit too.   My mom was not quick to jump on the BRCA bandwagon and her family doctor in Huntsville had not even heard of it.   So I tabled it for a minute, put it back in my pocket.  When she had cancer we just dealt, beat it, swiped it under the rug and kept moving.

At the end of this May I went to a Junior League Meeting on “Summer Health for Woman”.  I thought we would be talking about Sunscreen and how to prevent your kids from drowning etc.  I just needed the meeting credit so I went. But what was supposed to be a quick talk about the importance of SPF, turned into a real interesting conversation about the BRCA genetic testing.  Angelia Jolie had just come out with it and every woman in that room wanted to be educated. Typical of Junior League, they are always one step ahead of the problem. I always leave that building with more knowledge than when I walked in. The doctor there, was very educated on the matter because I think she had worked in New York where that gene showed up a lot.  95.69% of the woman in that room probably did not meet the criteria, but you never know. I knew I did, so I raised my hand and told a little bit of my story.  You must get tested the doctor said, you must. On the way home I panicked and called my mother and pleaded, 

“Please please, do this for me.  I want to have babies one day. What if we have the gene, and and I have to get my ovaries taken out?  I am running out of time! I want to prevent and I am 37 I only have a small window.  PLEASE!"

Through my panic and tears, she said in a calm and clear voice that YES OK she would do it (insert smiley face here). My mom is the bomb.com, the next day she called her oncologist in Huntsville and set up the appointment.  We went together.  It felt like doom and gloom but it was also empowering. We met with this precious Genetic Counselor, Amy.  She was so excited to hear we were Jewish.  She said she does not get a lot of people in Huntsville who qualify for this testing and although she hoped we did not have the gene she was glad to be participating in our process.  After many questions about our family tree and meeting with my mom’s dear oncologist from 25 years ago, Dr. Marshall Schreeder, we left feeling more educated and powerful.  If she has the gene, I get tested. If I have it, so what? We watch my breast and ovaries and in my early to mid forties I get it all chopped off.  New Boobs, I'll take it.  If we don’t then well my chances of breast cancer don’t vanish, but the percentage is much lower.  And when and if I have a baby I won't constantly be worrying about my timing as much.

That was one month ago when we saw Amy.  Yesterday my mom called and told me that we do not have the gene.  I was relieved.  After all that, after my family fled from Russian in 1917, after all the Ashkenazi Jews from 1000 years of traveling in tribes that did not marry outside their faith... only to keep waiting for the messiah and fighting to keep their their religion alive... we got a hall pass this time. And just because you are of that background does not mean you have the gene, your chances are just higher for breast cancer if you do.  And if you have it the good news is you can be preventative, as I still am.  I am not in the clear just because I do not have BRCA 1 or 2, I just checked one thing of my things to stress about list.  

Two things you need to know that I learned from Amy the Genetic Couselor:

1.  Just because you are not Jewish does not mean you do not have the gene. Talk to a genetic counselor if you have any questions about your ancestry as it relates to cancer.

2.   Like Dr. Maddux first told me, Knowledge is Power.  Whatever your background, if cancer runs in your family keep tabs on yourself. It is not as simple as taking the BRCA gene test for some.  Get regular check-ups, live your best life and stay informed.

Thank you again Angelia, for opening up a good can of worms. I would like to dedicate this blog to my mom Joni, to Sarah’s sister Mindy, to all my friends and family who are battling and beating the heck out of cancer as I write. To all the friends and family I have lost to cancer and their memory. And to all the doctors that educated me, thank you wherever you are for making me stronger and wiser. And to my husband, thank you for understanding that my life is an open book sometimes, writing and sharing helps me find my voice.  We have both recently learned the importance of preventative health and what it means to our family. 

To learn more about Ashkenazi Ancestry go here: http://en.wikipedia.org/wiki/Ashkenazi_Jews


Libby kiyak said...

Thanks for the topic! My mom died from ovarian cancer and I have been going back and forth about getting the testing. Decided recently I probably will. Many do not know about it, so it is good to get the word out. I can only hope they can find a cure soon for this horrible thing called cancer

Porch Swing Girl said...

Glad you are thinking about doing it. It is a simple blood test and becoming more affordable because of new heath care laws. There used to be only one company in the Country that would do the test and doctors had to choose that one company. Now they have competition. Good luck, if you decide to take the test it is in some ways a win win. You can be preventative if you do have the gene and then be relieved or just be relieved that your chances are lower. Sorry to hear abut your mom. Yes, Cancer is scary and the more we get the word out on BRCA the better for research!