Virtually every known "mother" on my mother's side died of either breast or ovarian cancer, making my family a prime candidate for genetic testing and a 10-year study.
This is my grandmother, Jan, and my grandfather, Frank. Jan died of breast cancer at age 54 when I was 10-years-old. The last ten years of her life were pretty horrific; too much chemo, loopy drugs, too many surgeries, and endless pain. It also involved an incredible miracle that extended her life by two years.
I remember pieces of her; the smell of Vaseline lotion being rubbed on her back, her love of watermelon, and her bald head.
I remember my mother crying on Mother's Day.
Jan's mother was Margaret. Margaret was 26 when she died during a difficult pregnancy. I recently typed up Jan's life story. Jan was often found in the dirt, trying to dig up her dead mother.
Mamie raised 13 children, but Jan would be the last. Jan was 11 when her "Mama" Mamie died of ovarian cancer. She was in her 50's. Interesting, that in my family, the BRCA1 gene presented itself mostly with ovarian cancer even though the risk of breast cancer is far greater.
Mamie's doctors didn't know she had ovarian cancer. When opened up for surgery, she was so full of cancer, that they just sewed her up and sent her home where she died a few months later.
Harriet, the little blond girl in the above picture died of ovarian cancer in her 40s. Her youngest child was 5.
Jan's mother, Margaret didn't live long enough to develop either breast or ovarian cancer, but we know she had it because her daughter, Jan had it. Jan was never tested, but we know she had it because two of her children inherited the gene. They were tested.
If you carry the BRCA1 gene, you have a 50/50 chance of passing it down to your children.
My grandparents on my mother's side. Jan and Frank had six children. My mother, Mary, is that sly lookin' cat, top left.
The researchers went after this family line; we lived in the Utah area, had excellent records and high death rates. Cheery oh! There were four girls and two boys. My two uncles tested negative for the BRCA1 gene. Men can inherit the BRCA1 gene, giving them a higher risk of prostate cancer, and of course, the 50/50 risk of passing it on to their children.
The researchers went after this family line; we lived in the Utah area, had excellent records and high death rates. Cheery oh! There were four girls and two boys. My two uncles tested negative for the BRCA1 gene. Men can inherit the BRCA1 gene, giving them a higher risk of prostate cancer, and of course, the 50/50 risk of passing it on to their children.
Of the four girls, it was determined that two of them were eligible to undergo genetic testing; the others were too young, and perhaps not emotionally ready to hear the news, should it be positive. They were not tested.
My mother and her sister were
tested. My aunt had the BRCAI gene and my mother did not. The BRCA1 gene test was in infancy, but even I knew it was a completely amazing scientific breakthrough that had changed my life.
As a 20-year-old science major hanging over cadavers, I was reminded daily of mortality. There was an incredible relief, and I launched into statistics while writing letters to a missionary who I'm sure found this BRCAI genetic testing just as fascinating as I did. He wrote back, "Well...I'm glad you're not going to die..." (I often cringe at my youth.)
I also felt guilty over my relief. My aunt had the gene, and her children, my close cousins, had a 50/50 chance of carrying it. I could not inherit the BRCAI gene mutation because my mother was not a carrier.
As a 20-year-old science major hanging over cadavers, I was reminded daily of mortality. There was an incredible relief, and I launched into statistics while writing letters to a missionary who I'm sure found this BRCAI genetic testing just as fascinating as I did. He wrote back, "Well...I'm glad you're not going to die..." (I often cringe at my youth.)
I also felt guilty over my relief. My aunt had the gene, and her children, my close cousins, had a 50/50 chance of carrying it. I could not inherit the BRCAI gene mutation because my mother was not a carrier.
This meant that my siblings and I had the same odds of developing breast and ovarian cancer as the general
population. Quite low.
My aunt on the other hand
faced a different type of odds, the same odds Angelina Jolie faced: a
terrible 87% risk of developing breast cancer. A 50% risk of developing ovarian cancer. With a mastectomy, her odds of developing breast cancer went down to 5%!
Recently my aunt celebrated
her 60th birthday with a wry smile on her face. "It was my goal to make it to
60," she told my mother.
She has not had a double
mastectomy. Instead, she chose increased
testing via pap smears and a complete hysterectomy.
Jolie's case brings the issue
front and center. I mostly disdain celebrities and the way they use their fame. But Jolie is one I've taken an incredible liking to; what good she is doing for women around the world!
For a woman known around the world for her physical beauty, she wrote an op-ed in the Times, "Once I knew that this was my reality, I decided to be proactive and minimize the risk as much as I could...I hope that other women can benefit from my experience…I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity."
For a woman known around the world for her physical beauty, she wrote an op-ed in the Times, "Once I knew that this was my reality, I decided to be proactive and minimize the risk as much as I could...I hope that other women can benefit from my experience…I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity."
Not everyone is a candidate for BRCAI genetic testing. With no family history of
breast or ovarian cancer, there is no need. Otis Brawley said in Time that we've scared the public though "the pinking of America," meaning the high-profile pink ribbon campaigns.
According to Time, the BRCAI gene is only present in .24% of the population and
accounts for no more than 10% of all cases of breast cancer. Still, when a mega-watt star like Jolie
makes a statement like she did, testing goes up. And overall, I think that's a good thing. The same thing happened with colonoscopies after Katie Couric had one on-air. (whew! missed that one.)
In 1995 I was going to school
in Provo, a 45-minute drive south of the University of Utah. Researchers called me multiple times so
they could interview me. I
explained that my mother did not have the BRCAI gene, therefore, I really didn't
need to be interviewed or receive "therapy." They countered that they really wanted
to talk to me since I was the "control group." I made appointments, but something always came up. An exam. A date. Homework. I never made the trip.
I kick myself now. I'm a curious cat, and would love to ask questions. Alas, the study is closed.
How does this family's story
end? It's hard to say.
A few months ago, my Aunt Margaret discovered something hard in her breast. She had missed her mammogram the previous year. After a doctor's visit and testing, she was diagnosed with breast cancer. She was one of the two daughters who had not been tested. And now we know: She has the gene.
She is the little girl on the right, before Joanne was born.
My Aunt Margaret is named after our grandmother, Margaret. Doctors say she's terminal. Which is a terrible word to write. The BRCAI gene indicates a very aggressive and insidious risk. Of course we try to be optimistic. The cancer has not spread and her spirits are high. But chemo and fear are now a part of daily life. She is 49 years old and has a 13-year-old daughter.
My Aunt Margaret is named after our grandmother, Margaret. Doctors say she's terminal. Which is a terrible word to write. The BRCAI gene indicates a very aggressive and insidious risk. Of course we try to be optimistic. The cancer has not spread and her spirits are high. But chemo and fear are now a part of daily life. She is 49 years old and has a 13-year-old daughter.
When I asked my mother if she is angry her sister didn't get tested twenty years ago she is quick to answer. "No, no, no." At the time she wasn't ready to hear the news.
This is something hard for me to fathom; who wouldn't want to know? How could it not be useful?
But part of the BRCAI gene study was emotional testing. If a person is not ready to receive the news, depression and suicide risk increases dramatically. If there isn't anything you can do about a diagnosis, and quality of life actually decreases, what is the use of knowing?
Where does this leave women? Genetic testing is usually not free, and is only the beginning of the process. After testing, genetic counseling is critical, which is definitely not free. Then perhaps preventive surgeries. More money.
This is something hard for me to fathom; who wouldn't want to know? How could it not be useful?
But part of the BRCAI gene study was emotional testing. If a person is not ready to receive the news, depression and suicide risk increases dramatically. If there isn't anything you can do about a diagnosis, and quality of life actually decreases, what is the use of knowing?
Where does this leave women? Genetic testing is usually not free, and is only the beginning of the process. After testing, genetic counseling is critical, which is definitely not free. Then perhaps preventive surgeries. More money.
My mother's last sister was just tested. For $140 dollars, she learned she did not have the BRCAI gene.
I suppose you could say this family beat the odds: Only 2/6 children carried the BRCAI gene.
In a fascinating New York Times article, Bruce Feiler, frustrated and concerned about our families (including his own), began studying and interviewing families and experts. Sara, a psychologist noted that children who "know a lot about their families tend to do better when they face challenges.”
The “Do You Know?” scale turned out to be the best single predictor of children’s emotional health and happiness."
This reinforces everything I know about strong, happy families: There must be a strong family narrative. We must talk around the dinner table, ask questions, tell the stories of our family. Know our history. We must tell our children how we met, how our parents met, who died of what and why.
We must know where we came from.
The research says our children will be happier, feel more in control, and families will be closer.
But knowing the history of your family can do something else, too: It can save your life.
For moments like this
And this.
To live another Mother's Day.
I smile when I look at this picture. Brynne was crying because we had to take two different cars to church and she wasn't coming in my car. But this picture makes me feel grateful.
The separation was a mere 40 minutes, not a lifetime.
Know your history. Act.
I suppose you could say this family beat the odds: Only 2/6 children carried the BRCAI gene.
In a fascinating New York Times article, Bruce Feiler, frustrated and concerned about our families (including his own), began studying and interviewing families and experts. Sara, a psychologist noted that children who "know a lot about their families tend to do better when they face challenges.”
The hypothesis was tested with a measure called the “Do You Know?” scale that asked children to answer 20 questions.
Examples included: Do you know where your grandparents grew up? Do you know where your mom and dad went to high school? Do you know where your parents met? Do you know an illness or something really terrible that happened in your family? Do you know the story of your birth.
The “Do You Know?” scale turned out to be the best single predictor of children’s emotional health and happiness."
This reinforces everything I know about strong, happy families: There must be a strong family narrative. We must talk around the dinner table, ask questions, tell the stories of our family. Know our history. We must tell our children how we met, how our parents met, who died of what and why.
We must know where we came from.
The research says our children will be happier, feel more in control, and families will be closer.
But knowing the history of your family can do something else, too: It can save your life.
To live another Mother's Day.
I smile when I look at this picture. Brynne was crying because we had to take two different cars to church and she wasn't coming in my car. But this picture makes me feel grateful.
The separation was a mere 40 minutes, not a lifetime.
Know your history. Act.
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