Breast Cancer Gene Testing: Do I Really Want to Know?

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For as long as I can remember, I have been convinced I was going to die the same hideous way my mother did. Metastatic, terminal breast cancer is not pretty. By the time she died, my 45-year-old mother was blind in one eye, bald, weighed 80 pounds, and was unable to get out of bed.

Her wheelchair was so tiny my 16-year-old, size-4 bum couldn't fit.

It's a disease far more horrible than the pretty pink ribbons would have us believe. And so every October, when we roll out the pink ribbons and walk for Susan G. Komen and raise money for breast cancer research, some of us who have seen the other side cringe a little.

Jessica Queller, who wrote the book Pretty Is What Changes about getting a preventative mastectomy after losing her mother, said people are divided into two camps when they think about breast cancer: those who see hope in a breast cancer diagnosis and those who see death.

I see death.

I was 16 when my mother died and still convinced I was invincible. I've hated my birthday ever since. Each candle on the cake was a reminder of how much closer I was coming to the year she was first diagnosed -- 40.

We all like to believe we can do it differently than our parents did, whether it's the way they forced us to sit at the table until we ate all of our peas or the way they died without saying goodbye. We'd like to believe we can escape their fate, but as we have children, many of us find ourselves saying the same things our parents did -- "Because I said so" and "You are driving me crazy!"

We all become our mother a little. Even those of us who barely knew ours.

For me, becoming my mother meant also facing my mortality. Of course, I had been facing it for years. My timeline was short and I acted accordingly: Marrying young and having two children by 30, building a rewarding career by 30, buying a house and generally living like people more than a decade older than me for most of my life.

The day I married my husband, he slipped my wedding dress off me and looked at me bare-chested.

"My hot wife, ladies and gentlemen," he said with a smile while I wondered what he would think when my chest was just two jagged scars. Most of the time I kept those thoughts to myself.

From the day I found out about BRCA testing -- the testing that looks for mutations on those two genes we all have -- I knew I would do it. I learned my children's sex in utero, I keep a stock of bottled water. I'm one who wants to know, a planner.

Though the BRCA genes aren't responsible for every case of breast cancer, they're responsible for many, and those who have the mutation tend to get the cancer diagnosis young -- like my mother. And since both my mother and grandmother had breast cancer, I'm considered "high risk."

The way I saw my life: marriage, babies, career, genetic testing, prophylactic removal of my breasts and ovaries with reconstruction, everything else.

There was no doubt of what I would do and I was sure I would have the gene. After all, my face is almost identical to my mother's. People say when I walk into a room that they feel like they're seeing a ghost. I got other things from her, too: my thick hair; my DD chest with which I have a love-hate relationship; my facial expressions; my sense of humor. When I miss my mother, I don't have to look much farther than the bathroom mirror to have her again.

Which is why I was shocked that I didn't inherit the gene.

Two weeks ago, I went into the hospital, I chatted for two hours with a genetic counselor, and I gave a vial of blood. Last week, the counselor called me back:

"It is completely negative," she told me.

When I tell my friends, they're all thrilled, but I know better. I know that because neither my mother nor my grandmother was tested that we don't know whether they had the gene. If they did and I'm negative, then my chances of getting cancer are the same as the general population (10 percent), but as long as my grandmother is untested, my chances are 23 percent and I'm still "high risk."

I also feel disappointed on some spiritual level. I'm not a religious person and I don't believe my mother died for a reason. But I do believe in science and I was hoping maybe science would tell me why I had to lose my mom. A faulty gene could explain what the Bible and my religious friends could not.

No such luck. And the fact is: It's good news. I didn't pass this faulty gene on to my daughter and maybe my mother's cancer was environmental. There is hope now where there used to be none.

My grandmother, who is 86, is talking to her oncologist. She's considering getting gene tested as well. To explain her reasoning for refusing is to open a can of worms about my mother's side of the family that I'm unwilling to write about yet. But suffice it to say that they haven't factored into my decision to test.

Some people want to know. Some don't.

But I do. I saw what cancer did to my mother and the ripple effects it had on her daughters. My sister and I miss our mother every day. My children will never know her. I'm certain that if she were given the option to "know" her destiny, knowing what we all know now, she would have taken it.

I don't know my destiny. I'm still high risk and I could get hit by a bus tomorrow. But I do know that the gene mutation I believed I had for so many years is not in my body. So I'm grateful. Grateful for my health right now and grateful for the hope this little test has given me.

Maybe I will get the chance to see my children grow up. It's a chance I'm certain my mother would have wanted to have, too.

Would you want to know?


aging, body image, breasts, cancer, medical tests

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LoriA... LoriAnn87

simple frownthis bought tears to my eyes as I was reading this because my mom found out she has breast cancer when she was in her late 35. She had her right breast removed and had treatment to make sure it didn't come back but it didn't work. My mom's cancer came back and this time it was worst then before. They gave her Chemo and radtion, she started to lose her hair and she hate because people would stare at her but she never gave up hope she kept fighting but after I graduted high school my mom was starting to loss hope but didn't want any of us too know. By 98 my mom cancer has spread almost every where. My mom finally got the news she knew all a long she was dying and she found out 3 days after mother's day.

LoriA... LoriAnn87

My mom lived for another 2 months before god decdie to take her to heaven. She was only 52 when she pass and I was only 20. I watch my mom go from a fighter to being at peace and that was realy painfully to watch but I was thankfully she was able to see me graduted from High school. As now i'm a mom and about to turn 32 next month I really i'm not looking forward to my b-day and don't really want to celerbrated because it 3 I will have to have my first mamogram. My mom was the first to have breast cancer in my family, in some ways I wanted to get test to found out but in other ways I don't want to know.

nonmember avatar Mike M

I've been into spiritualism for 4 years and I've had the ability to communicate with my spirit guide (it's like telepathy) for the past 2 years. This ability has given me the opportunity to ask questions about what is predicted for my future (nothing is set in stone - what spirits know about the future is the result of accurate predictions of the future). There are certain things that I am or have been hesitant to ask about, but my feelings are that as long as one is capable of accepting life for what it is (life on earth is just a short journey - there's much more outside of this) and accepting your own life as it is (or will be), then knowledge is likely to be a better thing than ignorance - knowing what your future may be can allow you to live a fuller life if it may come to an end before you feel ready. (Note that if you fear death I'd recommend reading some books about the spirit world as there's little to be afraid of.) If anyone here has any questions about your future health and would like to know what answers my spirit guide will give you (which I can't guarantee will be true answers because the spirit that reincarnated into your body may wish to experience life without such knowledge of the future [there's nothing to fear while living in the spirit world so if one wants to learn to better cope with fear then they are likely going to want to reincarnate]) than you can contact me via eupeptic on gmail. (I'll respond when I can, and I don't charge anyone anything.)

Mommy... MommytoIsabella

If Breast Cancer ran in my family, I would certainly want this test done. My family has a huge history of cancer, and my father died of Malignant Melanoma. Cancer has been in the back, front, side, of my mind for years and years. The thought of getting cancer scares me. So for the opportunity of taking a chance, and knowing the possibility ahead of time, and knowing that I could possibly head it off, to me is priceless. As far as being scared of death, in these situations, I think it is the 'life' before death that most are scared of. Dying of cancer is a horrible horrible way to go. Those months before are not a life you want anymore. :(


 

lee74 lee74

I want  to know there is so much history of breast cancer in my family even the men in my family has gotten it. 

ornght ornght

On my mom's side - Every woman had breast cancer but all survived.  On dad's side, my gma died from ovarian and breast cancer.  All my dad's sisters had breast cancer and all died.  Jan 12, 2010 I found a lump.  Didn't show up on the mam ultrasound or MRI.  My first surgery was on Feb12.  Turned out benign but surgeon fought w/ins. to let me take gene test.  I will never forget March 18 the day I got my results- I do not have a mutation in my gene chain, I have a genetic deletion-4153delA. I do not produce the amino acid or protein to fight breast cancer.  April 5th I had my double mastectomy w/the reconstruction w/expanders. My final reconstruction surgery  will be Oct. 20, 2010. I know someday I will die from this but at least we know for our children. I got my implants in July 27 in time for my 40th birthday - great new boobs for the price of a co-pay. My 39th year on earth really sucked. I wouldn't do this any differently it is not easy knowing what is in store so I really do dance like it is the last night of my life because if I ever have 1 active cell I will die. I look back on last Oct. and never in a million yrs did I ever think this would become my life. Good luck to all and I say take the test - knowledge is power and it surely changes what people think is important in life.    

Deborah Williams

Mother's day 1988 I lost mom too breast cancer she was only 50 years old.I am 43 years old and I just had the test done a few days ago if I am a carryer I really dom't know what I will do

nonmember avatar Lynnette Dent

I was diagnosed with breast cancer on May 21, 2010. It was the most unsettling news one person will ever recieve. I had my cry days and self pitty days, then I said if my Mother can beat this so can I. I am 41 and my Mother was 54 whan she was diagnosed. We both had lumpectomies that were successful. Mom did chemo and radiation as so am I as I type this. I will endure more chemo then Mom, but if it keeps it a way then I am all for it. I did have the genetic testing done and to my surprise I don't have the gene. It was a shock since beast cancer is common on my mother's side. I even had a plan it it came back positive. Just knowing I don't have the gene makes my life a little easier as I go through my chemo now. I would recommend the test for anyone who has a family history of cancer. To all those we have lost you are in our thoughts and prayers daily. To all those fighting throuh the cancer, good luck and God bless he as well as your family and friends are with you to help you get through the fight.

nonmember avatar Lynnette Dent

I was diagnosed with breast cancer on May 21, 2010. It was the most unsettling news one person will ever recieve. I had my cry days and self pitty days, then I said if my Mother can beat this so can I. I am 41 and my Mother was 54 whan she was diagnosed. We both had lumpectomies that were successful. Mom did chemo and radiation as so am I as I type this. I will endure more chemo then Mom, but if it keeps it a way then I am all for it. I did have the genetic testing done and to my surprise I don't have the gene. It was a shock since beast cancer is common on my mother's side. I even had a plan it it came back positive. Just knowing I don't have the gene makes my life a little easier as I go through my chemo now. I would recommend the test for anyone who has a family history of cancer. To all those we have lost you are in our thoughts and prayers daily. To all those fighting throuh the cancer, good luck and God bless he as well as your family and friends are with you to help you get through the fight.

Monya Heath Williams

I loved reading this.... I was diagnosed last year with stage 3c breast cancer, 2 differnt types of cancer and 3 lumps. I had a double mastectomy, 10 rounds (5 months of chemo) and 7 weeks of radiation everyday. I also decided to have the genetic testing done, not for myself but for my 3 girls. My grandmother died of bc, her mother died from bc and one of my moms siters died from bc, on my dads side it is riddled with all types of cancers. I knew for sure I was would be genetic positive.... I was not .....and it was a relief to know, however my husbands mother died of bc and my girls are not in the clear, I still think that no matter what there is a risk and being pro-active is always best. The fear unfortunetly for bc patients or their families ..... never goes away...well at least not for me or mine. Thank you for your honesty, and xoxo monya

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