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The Breast Cancer Gene: Do You Have It?

February 28, 2012 @ 4:09 pm (Updated: 5:29 pm - 2/28/12 )

By Rachel Belle

breast-cancer-ribbon

Listen to Feature: A Cancer Gene: Would You Get Tested?

If you had the opportunity to take a simple blood test, that would let you know if you'll get cancer later in life, would you take it?

Last year, when I went to my annual OBGYN appointment, my doctor asked me to fill out a questionnaire. Was there a history of breast or ovarian history in my family? YES. Am I Ashkenazi Jewish? Also, yes. My doctor recommended I take the BRCA test, that would tell me if I had a cancer causing gene that would elevate my risk of getting cancer to 80 percent. I had never heard of any of this before and was shocked to learn that I could find out now, at age 32, that I have this gene and will pretty much know that I will get cancer.

Jane Berkman was first diagnosed with ovarian cancer in 2004, and had a recurrence in 2007. Then she tested positive for the BRCA gene.

"I got tested because I thought, if I am positive, the chances of me getting breast cancer are so high that I definitely want to be proactive. I want to spare my kids from watching me go through chemo, because I watched my mother go through chemo."

She opted to have a double mastectomy, and they actually found the beginning stages of breast cancer during the surgery.

I have yet to take the test because...I'm scared! Do I want to have this knowledge? Will I spend my days anxious, waiting to be diagnosed with cancer? I consulted Women's Cancer Care of Seattle gynecological oncologist Kathryn McGonigle.

"There are psychological barriers. Patients fear what they don't know and they're not sure they want to know the truth. But honestly, knowledge is power and it gives you the ability to make decisions for yourself."

If you have the gene, insurance companies will pay for preventive treatments that you might not otherwise qualify for if you didn't know.

"There are treatments we can give patients that may reduce the risk of breast or ovarian cancer," Dr. McGonigle says. "In fact, birth control pills have, on the average, about a 50 percent reduction in the risk of ovarian cancer. There are patients who have this cancer gene defect and we'll ask them to do both breast MRI and mammograms, annually, starting at a young age. The thing that shows the greatest protection is actually risk reducing surgery. Patients who carry these gene defects may undergo prophylactic mastectomy and or removal of their tubes and ovaries."

See why I'm scared? At 32, I don't want to think about losing my breasts before I've been diagnosed with cancer.

Seattle restaurant owner, Susan Kauffman, tested negative for the gene. But she has had breast cancer twice. She says, at my age, she's not sure she would have gotten tested.

"It's a big philosophical decision. Having breast cancer twice has made me much more metaphysical and philosophical about life. Although I'm in remission, cancer is certainly staring at me. I've come to place where I go, 'You know, it's my life now and carpe diem, I could die of a heart attack tomorrow.' I'm not going to live waiting to die. So I have to question, knowing that you have the BRCA gene, whether that would really impede your quality of life as you move forward. It's a very hard decision. You have to be prepared with a game plan. To just know it, I think is kind of toxic. To know it and have a game plan and say 'I'm going to have a radical mastectomy, take my ovaries and uterus out.' I mean, women do it and they feel safer in life, and it's a very personal decision. I just have a hard time living my life, knowing that."

Dr. McGonigle says 75 percent of women with ovarian cancer come in at an advanced stage.

"It breaks my heart to see a patient who comes in and she says 'Yeah, my mother had breast cancer when she was 30 and I'm Ashkenazi Jewish' and now she's got advanced cancer. And I'm like, 'Oh my gosh, we could have figured this out earlier. I would have taken your ovaries out five or ten years ago.' I don't say that to the patient, but I may think it. I would love to just educate patients so they would find out about this ahead of time."

Dr McGonigle takes Jane along to speak to synagogues, and educate women, which I think is completely necessary since most women I've spoke to have never heard of BRCA. Information is the key: at the start of this story I did not want to get the test. Now, I plan to have it done.

Jane Berkman recommends this website for information, and forums, about making the decision to take the test and dealing with it after.

More Rachel Belle

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Comments (11)


  • Add A Comment

  • javery wrote...
    BRCA Gene
    February 28, 2012 3:46 pm
    I listened to your segment a half hour ago on Ron & Don. Great job! My daughter is just about the same age as you and is positive for the gene. She has surgery in two weeks. Her story is detailed here: http://www.youcaring.com/fundraiser_details fundraiser_id=839&url=justineaveryfightingbackbeforecancerstrikes. Don't miss the FAQs at the update tab and the you-tube video.
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  • Rayvensdad wrote...
    And why is it...
    February 28, 2012 5:41 pm
    That there are people who have the gene... but don't get cancer? There are variables that the Western world of medicine doesn't factor in, and because such, they'll be blindly looking for answers to questions they don't fully understand. Let the "Fear of Cancer" reign supreme to grant boat loads of money to the ultra powerful. Take a test, "you have the gene", let's take your reproductive system or breasts out......... sign here please. CHA CHING!
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  • Snout wrote...
    Would I take the test? Yeah.
    February 28, 2012 6:33 pm
    One has to be in charge of one's life. Are we going to stick our head's in the sand and expect other people to take care of us???
    { "Thumbs Up":"1","Thumbs Down":"-1" }
  • Fuego wrote...
    Only if....
    February 28, 2012 6:44 pm
    I could be assured that the insurance companies couldn't get the results.
    { "Thumbs Up":"1","Thumbs Down":"-1" }
  • Rachel Belle wrote...
    You ARE protected!
    February 29, 2012 10:18 am
    I didn't have time to include every detail in my story, but this was discussed. There is a law that protects people from being denied insurance if they test positive for the gene.
    { "Thumbs Up":"1","Thumbs Down":"-1" }
  • arihouck wrote...
    Thanks for your report
    February 28, 2012 7:39 pm
    I'm an outreach educator in biotechnology and I ask students that if they could know their genomic map and what they most likely will die from, would they..it is about 50/50. I let them know that they might think right now that they do not like science or biology or that they don't really need to know this information but their life depends on science literacy and advocacy for their own health. Understanding the central dogma of biology and where science is going is as important to students at 15 as it will be in their future.
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  • brca2+ wrote...
    Great resource for you Rachel
    February 28, 2012 10:04 pm
    I am BRCA2 positive and 5 weeks post surgery, bilateral mastectomy and reconstruction after having a first breast cancer several years ago. Consider this an invitation to the local meeting of our FORCE group in Seattle. There are many women your same age (some younger) looking for information to make decisions to take action (or not) with the gene test results. FORCE stands for "Facing Our Risk of Cancer Empowered". Contact information is on the website.
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  • Rachel Belle wrote...
    Thanks for the invitation!
    February 29, 2012 10:20 am
    The link I added at the end of my story is actually the FORCE website. I will have to check it out.
    { "Thumbs Up":"1","Thumbs Down":"-1" }
  • redokie wrote...
    BRCA gene
    February 29, 2012 8:38 am
    I listened to your segment on KIRO news a few minutes ago. It was of interest to me because I tested positive for the BRCA gene. One of the host on the news segment said the test is not for men. Perhaps that is usually so, however men may/can get breast cancer as well. I am male, I had the test done because my mother, sister and niece and other relatives had breast cancer. My sister and niece had the test done and are BRCA positive. They both chose to have preventive surgery. I have a daughter and 7 granddaughters, I understand that because I have the BRCA gene it can be passed on to them. So far, my daughter and granddaughters have not had the test done, so we don't know if they have it. As was mentioned in the news segment, with some people it is difficult to decide whether or not they want to "know" the future.
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  • Rachel Belle wrote...
    Yes, you're right.
    February 29, 2012 10:32 am
    Men can both get breast cancer and pass the gene along. Good luck to you and your family!
    { "Thumbs Up":"1","Thumbs Down":"-1" }
  • Julie (2) wrote...
    BRCA discussions
    February 29, 2012 12:49 pm
    Rachel, I've heard your segment twice on this topic now. The most recent one you corrected the pronounciation - BRCA is pronounced with the A sound as in Apple - almost sounds like bracket. Also, I've heard you refer to it as a blood test - it's actually a saliva test, or at least mine was. Swish and spit scope mouthwash into a little vial three times. The also do a full family tree cancer history. Know your medical family tree. My experience with all this started just rectently. I'm 47 and was diagnosed last summer with breast cancer. I've been one to routinely get my mammograms as close to one year as possible. This time they caught something. It was very small and treatable, but within that one year since the last mammogram it had also gone into the lymph nodes. Because of that I had to go through chemo and am right now in the middle of radiation. If I had had any way to prevent this back when I was 30 I would have jumped at the chance. In the grand scheme of things - breasts can be replaced, people cannot. I've also heard you say that one way to prevent cancer is through use of taking the pill. Please be VERY cautious of that. While it has been shown to reduce the rate of ovarian cancer, it also increases the rate of breast cancer. My cancer was 100% dependent on estrogen to feed it. Therefore it will be easier to prevent it from coming back, but it also was likely caused by me taking the pill off and on for 18 years. Do some checking into the statistics too... While those with BRCA positive genes are 80% likely to get cancer, they also make up only a small percentage of those that actually do get cancer. So, even if you do test negative, your chances of getting breast cancer over your lifetime is 12%. I understand that this all may be very scarey, but from the other side - it's pretty scarey actually getting cancer too. Feel free to email me if you'd like. I'd be happy to chat more.
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