BRCA Testing: I Did It For My Girls

I have a lot of cancer in my family. Both grandmothers had the misfortune of acquiring breast cancer and my great aunt died from ovarian cancer. In more recent years, various aunts and uncles of mine have had breast and prostate cancer, and in 2011, my mother died from ovarian cancer. I was devastated and terrified all at once. I felt like it didn’t matter anymore if I stood in front of the microwave while using my cell phone and heating up my dinner covered with saran wrap. I was resigned to the fact that I was going to get cancer.

Over the next couple of years, I dealt with severe grief over the death of my mother but also suffered an overwhelming anxiety about my family’s cancer history. Will I die of cancer? Will my girls get cancer?  Who’s next in line for this disease?  When the anxiety became too much, I took a tiny bit of solace in recalling a certain crazy trip to Key West in 2006. While on a vacation with my husband, I kept seeing a sign on Duvall Street for a palm reader. One evening I found myself waiting in line to meet the old, bearded man in the long, white robe. When I sat down the old man’s brown eyes bore into my blue. He took my small hand and turned it palm-side up and placed it into his own hands. Carefully, he told me these things: I will have one, maybe two children; I trust too easily; I will come into money; and that I will live into my 80’s and only then, will I have some heart trouble. Eight years later, some of what he has said has proven true and during anxious moments of excessive worry about acquiring cancer, as silly as it may be, I still cling to the old man’s words.

All this being said, last year, during my annual OB/GYN check-up, my doctor sternly suggested that I get the BRCA testing done. He knew my mother had passed away from ovarian cancer and he knew my extended family history. Angelina Jolie was all over the news that spring and I had been following her interviews. I became obsessed with the bravery of her choices.  After a long discussion with my doctor, I was handed a pamphlet on BRCA testing.I took it home and buried it among the papers of my desk.  There was no way I could do this testing because…what if? I was still reeling from the death of my mother and I didn’t think I could emotionally handle going through something so real and scary. It felt safer to dwell in a place of ignorance and so I used the high cost of the testing as my excuse.

Months passed and the BRCA testing still haunted me. I either carried the genes or not, right?  What would I do if I had them?  Have a full hysterectomy at age 36?  Have a double mastectomy like Angelina Jolie?  And then one day, I found myself scheduling an appointment to take the BRCA test.  I just woke up one morning and knew I had to do it. I owed it to my two daughters. If had the gene, they would have that knowledge and could eventually get their own test done. If I did not have the gene, I couldn’t have passed a gene I didn’t have on to them. For some reason, once I scheduled the appointment, I felt an initial calmness.

The day arrived for my office visit and it was rather stressful from the get-go. First, the nurse didn’t get the message from reception that I was there for a BRCA test. Then, I had to wait quite awhile while the nurse tended to other patients. Finally, the nurse was ready to see me and I expected her to do a blood draw. Instead, she told me I was to complete a Buccal Wash. I was told to gather as much saliva in my mouth and then spit it into this plastic vial. Then, I was to rinse with some Listerine and spit that into the same vial. Repeat. Repeat. Repeat. Three vials of Listerine and my saliva were sent off to a lab in Utah.

Next came the insurance approval process. It took nearly 6 weeks for my insurance company to approve the processing of this test. After multiple insurance reviews, case assessment phone calls, a final determination was made that I had “substantial risk”. And then I waited.  I waited for a white envelope that was from Myriad Laboratories. I waited for my future to be determined. During these weeks I would wake up at night in cold sweats, my stomach tightening as I would try and shut my mind off.  Each day, I would look into my girls’ eyes and silently plead with them to forgive me if I had passed a demon gene onto them.  I spent obsessive hours on the Internet planning how I could attack my own body in self-defense. And at night, when the house was quiet, I would cry with anxiety and fear that my husband would not find an altered body attractive anymore. Finally, one late July afternoon the white envelope arrived.

With shaking hands, I called my husband at work. “I don’t have the genes. None of them.” I began crying with a quiet relief and my two daughters noticed.  They came into the kitchen and wrapped their little arms around my waist.  “Mommy?  Why are you sad?” I told my husband I would call him back later and I knelt to their level.  I searched their eyes and took them into my arms.  “Mommy is crying happy tears…” They looked confused and so with a deep breath and an even tighter squeeze I whispered, “It’s one less thing…”

I had done this for them.

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About the writer

Anne Reber, author of the unique blog “Anne Reber Writes”, takes her readers on a personal journey though the last eighteen years of her life. A memoir in the making, Anne courageously explores her past as it relates to the future. Readers will connect with the universal themes of courage, change, grief, hope and love. You can read her beautiful blog at Anne Reber Writes. You can also follow Anne on Facebook, on Twitter, or on Google+.

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Lynn Struck 1 year ago

This is a hard one for me. I too faced the decision some time back as to whether I should have genetic testing after I was diagnosed with an aggressive form of breast cancer. My sister was a breast cancer survivor so she took the first step in being tested and yes, she was positive. I then got up my courage and I also tested positive for the BRCA II gene. This news was devastating but even more so was when my two adult daughters were tested and they were both positive. I was shocked at those odds. It is has been an journey and one the will continue for some time but we have accepted these results and both my daughters are taking precautionary measures. As much as I did not want to know that I was a carrier and as much as I did not want to know if my daughters were positive, now we know and they can do something about it. If I had had the opportunity to be tested 20 years ago and could have taken precautionary measures I probably would not be living with stage four metastatic breast cancer. There is no cure for where I am at, only hopeful management. Anyone out there who is questioning whether to have this test done because of family history, I urge you to do it. Education is your best defense when it come to the BRCA gene. There are things you can do to prevent this cancer from taking over your body. This is not a fun thing to talk about but thank God that these tests are available now and that those who are positive can take action and take away the cancer thing in their lives.

Amy Forrester Parker 1 year ago

I think all insurances should cover this.

Trisha 1 year ago

Those of you wanting genetic testing, please meet with a cancer genetic counselor first. Find one here: http://nsgc.org/p/cm/ld/fid=164. We can assess whether or not your family is truly high risk, identify the best person in a family to be tested first, and help identify who else may or may not be at risk. It is important to understand the limitations of testing, especially if you have NOT had cancer. Even if you don’t qualify for testing, we can assess your personal risk factors and help tailor an appropriate screening program for you. If you’ve had breast cancer already and had testing that was negative, contact a genetic counselor to discuss the possibility of newer, updated testing.

Jeanette 1 year ago

Think you for this writing. It’s a brilliant take on how other women with the BRCA gen are thinking.

Im with you all the way from Denmark, so bare with me if there’s a lot og mistakes :)

My mum died at 51. She had ovarian cancer. It was discovered way too late. I was 25 when she died. Same year my aunt has breast cancer and my 2nd aunt starts seeing a family pattern. My granddads two sisters had both died from breastcancer. She sees a doctor who gives us notice about the BRCA gen. I have never heard of it before at that point. My aunt with breast cancer gets a test done. She has the gen. So did my mum (most likely). My older sister and I decides that we both want the test done right away. Turns out we both have the BRCA gen. My sister has two little kids, and she wants the surgery done quickly. The remove her entire breast – and they cant “remake” new breast right away. It takes a year and a half. Long process. Later she gets her ovaries removed. At age 37.

I now have two small kids of my own, and I also want the surgery done. Both my breasts and ovaries. Im 34 now, and I want it done within the next couple of years.

The decision is difficult. But not that difficult. Our doctor told us that we had the chance of taking control over cancer, before it toke control of us.

I remember those words. I look at my kids. I remember the grief when my mum was sick and died. I can never put them in the same situation if I can have a say in the matter. I want to live. My chances are much better if I chose an operation, so of course I do.

Luckily in Denmark such things are free because of our health care, so I dont have to worry about that.

But for me it’s Almost not a choice. Its a must. It’s something I have to do. For my kids, my husband, my family …. For myself.

Theresa Williams 1 year ago

I too have lost many family members due to breast cancer. My Grandma and 3 of her sisters (2 passed away), then 2 of my Grandma’s nieces (both passed), my mom and recently a cousin (who just turned 25 before passing away). All these ladies were under 50 when they were diagnosed, except my cousin. My mom was 35 when she passed. There was not a day that went by without thinking of getting the test done. Now that I’m a mother myself, the stress and anxiety and even a bit of depression have been overwhelming. Breast cancer hasn’t skipped anybody in my family yet. Why do I need a piece of paper telling me that I may or may not have this gene? Granted, I could be the first to not have it. What if I found out I do have the gene? Then what happens? I would spend the rest of my life wondering the what if’s. You can tell me no, it wouldn’t happen but you’re mind is very powerful. When my daughter is old enough and if she wants to do the test then that’s her decision. I choose not to do the test. It’s not a decision that I came to lightly. And if it ever happens, we’ll take it one day at a time.

Erin Sinclair Falls 1 year ago

I did it last year. One of the best decisions of my life.

Michelle Auerbach 1 year ago

I am positive. Please feel free to PM me if you want to talk about what that means. For me, with my mutation and family history I had an 87% chance of breast cancer and 45% chance of ovarian. I had a preventative mastectomy in May so my breast cancer risk is down to about 5%. I’m only 31 and not done having kids so I haven’t had my ovaries out yet but that’s happening around age 35.

Michelle Auerbach 1 year ago

BRCA only accounts for about 10% of breast cancers. Being positive just means your chances are even higher than the national average of 1 in 8. I think the general population has a 6% or 8% chance. Being BRCA+ my risk was 87% until I had my preventative mastectomy in May.

Michelle Auerbach 1 year ago

Being negative doesn’t me a you’ll never get cancer. Hereditary breast cancer only accounts for about 10% of breast cancers. Being + just means you have a much higher chance of getting it and it could be much more aggressive.

Michelle 1 year ago

I am BRCA+. I also did the test for my daughter and any future children, as well as for myself. My sister was pregnant when she was diagnosed with breast cancer. I was pregnant at the time as well so as soon as I had my baby I did the test. In May this year I had a prophylactic mastectomy. Anyone wanting to read my story or ask me questions is welcome to go to my blog: http://www.fixingtheglitch.wordpress.com As you will see I am an open book in this regard. I’m glad you were negative bc the emotions I have had to deal with since finding out I am positive make the weeks I waited for my test results look like a cake walk.

Shana Cantrell Klinefelter 1 year ago

My dad has BRCA 2 so I was tested 6 years ago. I tested negative. What a relief!

Holly Riss 1 year ago

I was diagnosed with breast cancer January 2014, small lump/found early. Most likely a lumpectomy and radiation. Genetic counselor recommended highly I have the test done as I was only 41. No one in my family had breast cancer and my risk was only 6%. Test came back positive and my whole world changed. Chemo, bilateral mastectomy with reconstruction, chemo again, and a full hysterectomy this fall. I would have never done the test on my own due to the fact that there was no family history. I have a son (13) and daughter (11) that now makes me so glad I did do it. And I live every day that I may have passed this awful gene to them, even though knowing I am not responsible. It still breaks my heart.

Anne Reber 1 year ago

There is a very important point to be reiterated that many of you have mentioned. A woman can still get breast or ovarian cancer even when they do NOT have the gene. We must be vigilant about our own personal health. We all, myself included, need to do monthly breast self-exams and see our gynecologists annually. It was my family history and recent death of my mother pushed me to find out if I also carried the genes.

Mary Beth Morgan 1 year ago

I had the Brac test done and was found to be negative.Almost didn’t go to annual Mammo because of the results, but did and I had a lump that was then removed. Was very early stage so no further treatment,but if I relied on that test who knows what would have happened. Always go for your Mammograms!

Anne Reber 1 year ago

I was convinced that I had the genes. I was dealing with the profound grief I felt over my mother’s horrible lost battle with ovarian cancer. My grandmothers both had breast cancer and my great aunt, ovarian cancer. My paternal aunt is in remission from breast cancer. I not only was prepared to have a full hysterectomy, I was prepared to offer my eggs for donation. I just knew that I had to get this checked for the sake of my two daughters. I know that I am still at risk for cancer, but my percentage of risk has decreased. This is important to remember. It was scary and nerve-racking but after watching my mother go through her horrible ordeal, I felt that knowledge, although not a full guarantee, was power. xo to you all.

Jenny Murphy Elkjer 1 year ago

I’m 34 and considered high risk as well due to family history. After talking to my Dr. I made the decision to get tested for 2 reasons. #1 My dr explained that if I was positive, my insurance would cover more preventative exams and tests like MRI’s, ultrasound etc. to detect any abnormalities. (Not everyone chooses to have mastectomies like Angelina Jolie…but that is an option) #2, I think it’s better to know so I could be aware and maybe spend more time doing self checks. I was able to get tested the same day I made the decision, and it was covered fully by my insurance. I got a call about 2 weeks later saying it was negative! Of course that still doesn’t mean I’m home free, just as a positive wouldn’t mean I’d definitely get cancer, but it takes a little weight off my shoulders.

Debbie Neal 1 year ago

Cancers run thick in my family plus I have a virus that causes cancers I’ve requested myself and my daughter to be checked by numerous doctors they refuse even though we are high risk for multiple types they say its unnecessary and won’t do the test!

Debbie Ford Currey 1 year ago

I was diagnosed with Breast Cancer at 35 and have had 8 rounds of chemo, 14 rounds of Herceptin, and a double masectomy with reconstruct. I’m now cancer free. When I found out I had cancer I haste BRCA test done so I would know if I needed a full hysterectomy and to see if my girls would get the gene from me. My test was negative but I will still insist that my children get a BRCA test done because the Paternal great grandmother breast cancer too

Heather Gochoel 1 year ago

I wish family history wasn’t a requirement for insurance approval. Some of us don’t know our biological history and could be at risk but won’t know until something happens. I’d love to get this test done so I have the information. For me and my daughter. But there’s no way I can afford it myself. Since I’m adopted and have no documented history it’s not going to happen :-(

Kim Gardner 1 year ago

I had the same experience as Dana above. Met with genetic counselors and then again when I got my results. They warned me that even though I may be negative, I cannot dismiss monitoring because scientists are still learning so much each year about our genes.

Erin O’Neill Leland 1 year ago

I’m so happy so many are sharing their stories of negative test results. I just thought I’d mention that a negative result doesn’t guarantee you won’t get it. I’ve had breast cancer twice. (6 surgeries, one round of radiation, and 4 rounds of chemo).Two family members on my dad’s side have had it twice along with ovarian. We all tested negative.

Jennifer Wall 1 year ago

Did it and am positive! I have had 2 out if 3 surgeries done! Do it for your kids!!!!

Kim Gardner 1 year ago

My sister was diagnosed in 2003 with stage 4 breast cancer. She was 25. We lost our grandma to breast and ovarian cancer and an aunt on that side to ovarian. My sister had the initial test done (to prove to Florida medicaid there was a need to remove her pre-cancerous ovaries) and then I had mine, both in 2004. My sister was positive for both BRCA mutations and I was negative. I still keep up with annual mammograms because additional testing and spots on the BRCA genes are still being explored for mutations. Just because you are negative, don’t let your guard down. We have a cousin who tested negative like me and was diagnosed with stage 3 breast cancer at age 39. I’ve been advised to do more genetic testing and continue with mammograms and a yearly MRI.

Thanks for writing about your testing.

Sarah Scharber 1 year ago

This gene
Is in my family. I thank God my dad tested negative so they said his kids are in the clear- but some of my aunts and cousins tested positive :(

Angie Konandreas 1 year ago

I did it too! For all of them!

Dana Conners Dalton 1 year ago

Also, another difference is that I met with a genetic counselor to discuss my individual situation in depth before taking the blood test. So if you are considering the test, I highly recommend a thorough meeting with a genetic counselor. Very helpful information.

Siobhan Mechura 1 year ago

I did it last year…my grandmother is a breast cancer survivor….and my Aust had ovarian. …mine came back good Im dont have the gene…

Ashley 1 year ago

My story sounds eerily similar. I met with a geneticist and we went over my extensive family history, breast cancer in both male and female relatives on both sides, ovarian cancer in my mother… blood was drawn. I didn’t really think about it (hahaha, it was Def in my subconscious! ) when the geneticists called and said negative for all genes I bawled!!! I am vigilant on screening, my family history Is just too great not to.

Karen Zellar-Dutta 1 year ago

What if the test came back positive? My mom died of breast cancer at age 54. No other cancer in her side. But a bunch on my dads. My ob didn’t seem concerned. I think I would fall apart if my test came back positive. My mom was strong. I am not.

Erin 1 year ago

I am so happy you don’t have the gene. I don’t have the gene, but I’ve had breast cancer twice. Three in our family (on my dad’s side) have had it twice. Along with that, my aunt and cousin have had ovarian. My cousin’s stage 4 bc actually took over he whole body including her brain, and she is finally managing her cancer. It’s a miracle that she is still with us. She will live with this disease for as long as she can. Right now it’s only in her blood. I hope everyone reading this realizes that a negative gene test does not guarantee that you won’t have breast cancer. I never dreamed I’d have it at 31 and 36. I never dreamed that I would no longer have breasts and that I’d be happy to have curly hair after being bald for so long. Feel your boobies, everyone. I found my cancers both times. Know your bodies, and insist on tests. By the way, mammograms don’t work so well with young and dense breast tissue. They must be used in conjunction with MRI and ultrsound. A mammogram caught my first battle. The ultrasound and MRI caught my second battle- the mammo showed nothing, and this cancer was way more serious.

Meredith 1 year ago

I was diagnosed with Stage IIB breast cancer in January at age 43. I’ve had a unilateral mastectomy and chemo and am starting radiation and hormone therapy in the next couple of weeks. I have no significant family history of breast or ovarian cancer in my family, but I couldn’t make the genetic testing appointment fast enough. My daughter is 8 and I did it for her. I don’t possess either of the BRCA genes and am more than grateful that I did not pass on the cancer genes like I passed on her temper, red hair and love of reading. As it is, she will need to start getting mammograms and ultrasounds 10 years before the age I was when I was diagnosed. That’s 25 years away. I pray that tremendous strides are made in the next 25 years and she won’t have to worry about losing her breasts.

Jennifer Hopple Linhares 1 year ago

CALL!!!

Christina Asamoah 1 year ago

This made me cry! I know I gotta make the call.

Dana Conners Dalton 1 year ago

Me too. My situation was a bit different. I had already been diagnosed with breast cancer (at age 42), so for me, the reason for the test was mostly about the ovarian cancer gene and for my daughters. I, too, had negative results, and not a day goes by when I don’t think about this. Although other genes are certainly involved, it is one less thing…

Karen 1 year ago

And my ob didn’t seem concerned.

Karen 1 year ago

What would you have done if it came back you did have the genes? My mom died of breast cancer at age 54. My aunt on my dad’s side had stage 0 breast cancer…whew. Her mom died of ovarian. My dad’s sister died at age 4 of leukemia. Their cousin died a few years ago of breast cancer. My mom’s side has no other people. I don’t know what I would do if mine came back positive. I might have a breakdown. My mom handled her cancer soooo freakin well. Like a trooper the whole entire time. I don’t feel that strong. How would you have handled a positive test?

Melissa Kay Hampton 1 year ago

I had mine done a few months ago. For me, the testing process was quick, results were back in less than two weeks, and my insurance co pay was $5.

Sarah Fritz-Maldonado 1 year ago

I need to do this

Katherine Huddleston Pye 1 year ago

Best test I ever took. Now I have ones less thing to worry about.