9/26/13

Genetic Testing: I'm Getting Tested for the BRCA Gene Mutation (AKA The Breast Cancer Gene Mutation)

It's a sick joke, but I always tell Rob to start keeping his eye for another wife when I turn 50-years-old. Around that time, he'll have the chance to pick up a shiny new bride thanks to my family history with cancer. I don't think any of my grandparents saw the age of 60. In fact, when I was born, they were already dead, mostly from cancer. My mom even died of breast cancer in her early 50's. Last week I decided to do something about my morbid joke: I took the BRCA gene mutation test. While it won't tell me my chance of getting all cancers, it will give me a better sense of my chance of being diagnosed with breast and ovarian cancer.

Remember when Angelina Jolie's article came out in the NYTimes earlier this year? She wrote about how a positive test result for the BRCA1 gene mutation led to her to take drastic measures to avoid the 87% chance she had of developing breast cancer. I was extremely judgmental of her article. I hated how it felt like everyone was congratulating her for being so brave. With my family history, I always assumed I had the BCRA gene mutation but didn't have the means to do what she did. When my friend Sarah shared the article on Facebook, my reply lacked understanding. Knowing what I do now, I wish I could take the comment back. But it was my gut reaction. Here's a screenshot of my mortifying response:



Sadly, I don't think I was the only one writing critical things about the article. I cringe when I think about it now.

So when I was at the doctor's office last Friday for a regular check-up, and she asked if I ever thought about taking the BRCA gene mutation test, I replied much like I did to the article, "Sure, I've thought about it. But why? I assume I have it. What could I possible do with that information? It's so expensive anyway. I could never afford the test or the measures I'd need to take to avoid cancer."

She responded, "Well, for one, you could find out you don't have the mutation and have peace of mind. That would be nice. And if you're positive, you'd be monitored closer, get more mammograms each year and be assigned a breast specialist. And plus, with your history, I'm pretty sure your insurance will cover most, if not all, of it."

I thought for a minute and realized I was curious to find out. I always was. I told her I'm interested as long as my insurance will cover it. She assured me if it didn't, then I would be notified and decide what to do from there. I decided to go for it.

"Ok," she said, "I'll go get it."

Wait, I thought. Go get it, now? Like the test kit is your office? It's this simple? Minutes later the nurse was drawing blood and shipping it to a lab in Salt Lake City. I find out the results in a few weeks.

I wish the results didn't take so long. I wish I would have taken this test sooner. At the time the article came out last May, I had the exact same insurance I have now. The exact same family history. I could have gotten it then and had the results months ago. But now I'm stuck waiting around for the results. I call the lab everyday to find out the status of my test. Everyone on the phone is so kind and encourage me to call anytime. Currently, I'm waiting for my doctor to submit a required form. As soon as she does, the lab will proceed with my order.

I'm trying to keep my mind off of it and hope everything will turn out fine. It probably will be. I hate this waiting place though. It's such a useless place. I can't wait to escape. There's fun to be done!

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37 comments:

  1. you're smart and brave to get the test done! it must be so hard to wait for the results, but just think how much sooner you will know then if you didn't take the test at all. hang in there. and do something awesomely fun in the mean time: ice cream and more dancing with that cute family. you deserve it, lady.

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  2. Wow! Thank you so much for writing about this.

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  3. Thank you for sharing this - the only form of cancer in my family that I know of is lung cancer in one case and skin cancer in a few cases, so the only thing I do is have a doctor look at my skin and moles every now and then ... I can't imagine life with a fear of breast cancer - but I think I would safe up everything I have if insurance wouldn't cover the operation. Let's hope your test results will be back soon and not too negative. I wish you all the luck in the world.

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  4. You're brave to do this and to share. Keeping all my limbs crossed til we hear about your test results!

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  5. Good luck with the test (and the waiting period). Let us know what you hear back!
    Suzanne

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  6. Sharon, I am hoping that you'll come back negative, but you should know that with your family history, you are still likely at high genetic risk even if you do. BRCA1 and 2 have been isolated (and I feel lucky -- I know I'm BRCA positive and I'm taking preventative measures to manage the risk) but researchers know there are many other genes that mutate that run in families and cause high rates of cancer -- they just haven't been isolated yet. I don't mean to be Debbie Downer, I just don't want you or anyone else with breast cancer in their families to feel that because they don't have a BRCA mutation, it doesn't mean they're not in a high risk category. I'm not a doctor, but if I were in your shoes I'd still get mammograms and 2x/year breast MRIs so that you can be watched closely. My two cents!

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    1. such a good point!! you're not being a debbie downer at all--you're sharing totally great info. thank you :)

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  7. I totally understand your reaction to angelina jolie's article and I wished we could pay more attention to the every day héroes more than the "beautiful and famous héroes".
    Either way, the chances of having some sort of cáncer are not very rare so it is important to keep up with the medical check ups and do our best to have good spirits and follow all the medical recommendations.
    good luck !!

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  8. Sharon - thank you so much for sharing this. I have never commented on any of your posts about your mom, but this one really hit home to me. My mom also died of breast cancer in her 50s. Three months before my mom died, my grandma died of a rare kind of glandular cancer. Then, just later year, my other grandma died of breast cancer after only treating it for about a year. Cancer blows chunks.

    With that background, I also had a bit of a negative reaction to Angelina's article, but I was trying not to be judgmental and I did respect her choice to share her experience with the world. I was also negative about the article because I also did not think I could afford to take the genetic test.

    You have inspired me to check into what it would cost to take this test and suck up the out of pocket costs. I need some peace of mind as well. I am 10 years off of the age when my mom was diagnosed (42) and I don't want the years to tick buy and feel like a time-bomb. I can't live in fear.

    But I agree, waiting sucks, and I appreciate you sharing your fear with us!

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    1. "tick by" - sheesh, I can't just leave my own comment with spelling mistakes!

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  9. I love you much more than I already did for calling yourself out on a negative comment you posted online. I don't think I've ever seen anyone do that. Best of luck with the results (fingers crossed).

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  10. My mom had tested positive and passed away of ovarian cancer at 55. I did the test last year. I live in Canada and the test, and all related surgeries are covered by provincial health insurance. I tested positive and am waiting on a date for my double mastectomy, which should be happening before the end of the year.
    People were so judgmental of Angelia when her story came out and I've definitely heard my fair share of judgmental comments already. Oh well.

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    1. wow! i will definitely be coming back to you for advice should my results be positive. good luck with everything!!

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  11. Thanks for your candor. I stick my foot in my mouth all the time online! It's nice to know I'm not alone :/

    Here's hoping you get good news!!

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  12. My mom recently had this test due to our strong family history. She was extremely nervous but kept telling me she was doing it for me and my brother. She tested negative, which means that my brother and I are both negative as well! happy day! The waiting is the hardest part.

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    1. yay! awesome news! that's another reason i'm hoping it's negative :)

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  13. Pretty much every one on my mom's side has had breast cancer (my grandma and mom died from it), and when my mom was still alive her longtime (25 yrs) oncologist always bugged my sister and me to get the test. Finally I decided I would because my insurance covered it, and a cousin of my mom's had had it done previously and thus it would be easier and less expensive to isolate the gene path in my family. I tested negative, but my older sister tested positive. For me, this information has been very difficult to digest: my sister will probably get cancer and I probably won't. I feel tremendous guilt and a strong desire to be the one who is positive.

    My cousin also tested positive - she opted for the full Angelina Jolie and is happy with her choice. My sister opted for increased screenings (every six months an MRI, every other six months a mammogram) and nothing more. She's 31 and has a 2 yr old daughter with the hopes of having more children. I worry about her getting cancer all the time.

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    1. Maybe she will change her mind once she is finished having kids. I can't imagine how hard that must be for you!

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  14. Oh Sharon. Such a timely post. My Mum was diagnosed with ovarian cancer 3 years ago. Six moths later, my sister found out she had breast cancer. Both began chemotherapy and last year, my sister was given the all clear. Six months ago, she was told that the cancer had not gone but had actually spread to her brain and lungs. Last week, we found out that the cancer has spread to my Mums bones.

    I'm in pieces. I'm scheduled to meet with doctors in October and they will decide from there whether or not ill be tested for the BRCA gene. Ill go privately if they say no.

    Ill be thinking of you whilst you wait for the results.

    Thanks for this post.

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  15. Hi, I was diagnosed with breast cancer at the beginning of this year and I am clean of cancer now (for now?). I had the BRCA test done before Angelina Jolie's piece came out. I did it, because although I have no cancer in my family history, I have two sisters and two daughters. (The test came back negative).

    I did a lot of research about the test, including insurance coverage, and learned that for once the complicated financial relations within the medical/pharmaceutical world work in my benefit. It is definitely an ease of mind and it's important information for the family. Like yourself, no one should dismiss the idea immediately, if they think they are at risk. They should call their insurance company, or ask their doctors/nurses about the payment option.

    Good luck to you and those who responded above.

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  16. This is such a heartfelt post. I wish for you that you get the results quickly and that it is good news. I feel really sad that you would have to consider finances in relation to health though, I hope other people who have a similar family history to yours are also able to access whatever healthcare they need without having to worry about financial impact

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  17. This is a pretty serious week of posts. You keep it real around here, which I really admire. I can certainly understand that those who have a history with breast cancer, especially losing your mom, might have complicated feelings about this test and preventative surgeries. Without that personal history, I know that if there was a test out there that was relevant to me and would tell me something about my chances of dying before my son goes to college, I would spend every dollar I have on it and sell everything I own if I didn't have the money.

    I really hope the test is negative for you. Either way, knowledge is power.

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  18. THANK YOU for posting this. Cancer is huge in my family too, not just breast, but pick your organ, we got it. With the delivery of my baby this spring, I've met my insurance deductible and I'm very interested in finding out what tests are covered. Obviously it's not a guarantee, but I do think it would help flag anything I should pay particular attention to.

    Good luck with everything and I hope you get your results swiftly! xoxo

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  19. My mom was diagnosed with breast cancer about two years ago (She was 60). It was caught early in a routine mammogram (she couldn't even feel the lump). She has since had surgery and radiation and is in the clear now... Since she was diagnosed I've been amazed how many people I know also have moms, grandmas, and aunts who have survived breast cancer. If there's anything good to say it's that detection and treatments have come a long way (and hopefully will even more by the time you're 50).

    My mom tested negative BRCA (which I believe means I'm also negative). I had never even heard of BRCA until she was diagnosed though, so I also think it's a good thing Angelina raised awareness about it. Good for you for getting the test.

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  20. wow -- how timely. My mom was diagnosed with breast cancer one week ago.. She's 52, I'm 27 and I haven't been able to process it yet. The only thing I can focus on is how few books there are on how to cope with a parent/spouse having cancer.. Thank you for sharing this and good for you for getting tester. Better late than never.

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  21. I was tested earlier this year after my mother's test came back positive. Mine did, too. Interestingly we don't have a family history of it. It was nice to have Angelina share her story because it makes it easier to discuss with others. I turned 31 about a week ago and I dont know what I'll do with the info. I mean, I am already exceeding the life expectancy of my sister who quite randomly was diagnosed with gastric cancer and died a few weeks after her 30th birthday.

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  22. I never comment on your blog but i'm a reader from the netherlands and just wanted to let you know that waiting sucks! So nothing i'm going to say will make that better but i just wanted to let you know that i've read your blog and think about you. All the best, hope the results will come soon!

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  23. you are so brave to write about it! fingers crossed for you! from PL too:)

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  24. Good for you for taking this huge step, it really is so brave. Sometimes it's so much easier with our heads in the sand, and so scary to think of actually possessing knowledge that might force us to actually be faced with decisions rather than leaving it in the hands of fate and just cringing. I'm super impressed and my thoughts are with you as you wait. You're absolutely right, the waiting place is one of the worst places to be. Keeping my fingers crossed that it pays off with good news for you!

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  25. There was just a freakonomics podcast discussing just this topic. Wanted to pass it along. http://freakonomics.com/2013/06/20/do-you-really-want-to-know-your-future-a-new-freakonomics-radio-podcast/

    I do think you are brave! Hoping the best for your results.

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    1. hey sarah. i've been wanting to listen to this ever since you posted the link. starting it now!! thank you!!

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  26. i wonder if it gets sent to myriad in salt lake city. I live right by it and my sister actually just started working there. It seems like a great place. Hopefully you don't have the gene. I just read an article about this in a magazine like glamour or cosmopolitan where an 18 year old tested positive so she opted to get a double mastectomy. Seems to be a hot issue now understandably.

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  27. Time just really grabs you by the balls when you are waiting for something, huh? Regardless of the result, it will be nice to have an answer. :) You're the best, Sharon!

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  28. If you think you're risk is that high, then the $20K that you estimated Angelina paid was money well spent. What's your worth?

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  29. I just wanted to add that after i posted I actually just found another article in a magazine, and it mentioned that he gene can come from the father so just so everyone knows!

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  30. I have pretty much the same family history of cancer. I wish you the best!!!

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