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So You’re BRCA+, Now What?

Knowledge is power. How many times have you heard that one? Do you believe it? I certainly do. This might lead you to believe that deciding to undergo genetic testing was an easy decision for me to make, but you’d be wrong. I know it is an easy choice for some, but for me it was not.

Unlocking secrets in your DNA, may very well be empowering, but at the same time, it can also be overwhelming and yes, downright frightening. Let’s face it, sometimes ignorance can be bliss too.

If you’re contemplating genetic testing, click here for ten tips to help you with your decision. Bottom line is, if you’re going to get tested, you have to live with the results. You can’t stick them back in a time bottle.

If one of your parents has already tested positive for the BRCA1 or 2 gene mutation, then you have a 50/50 chance of testing positive as well.

If you end up being one of the unlucky ones in this particular coin toss, then what?

These days, it might seem as if everyone who tests positive for these mutations is choosing prophylactic surgeries. Who can forget the media frenzy when Angelina Jolie announced she had chosen this route?

It’s important to remember that there are other options. Not every woman who tests positive for a BRCA mutation chooses prophylactic mastectomy, though these are the decisions/stories that do receive the most attention for sure.

What are the options when you test positive (before a cancer diagnosis)?

There aren’t many and none of them are all that great, but here’s what’s usually suggested:

1.  A woman can choose diligent surveillance.

Generally, this means alternating between mammography and MRI every six months.

2.  Many doctors recommend that pre-menopausal women at high risk take Tamoxifen.

Exemestane (Aromasin®) is recommended as something for healthy, post-menopausal women at high risk of developing breast cancer to consider taking. Other doctors recommend Raloxifene (Evista®). Anastrozole (Arimidex®) is being looked at as a possibility for high risk post-menopausal women as well. This option of taking one of these drugs is also referred to as chemo-prevention.

3.  And of course, there is the prophylactic bilateral mastectomy route.

This means removing healthy breasts to decrease risk. It’s important to remember that prophylactic surgeries do not eliminate cancer risk; but they do substantially lower it. And yes, this is a drastic decision and also an entirely personal one.

4.  Since being BRCA+ also elevates risk for ovarian cancer, it’s often advised that a BRCA+ woman consider removing her ovaries when finished with having children. Doing so can cut risk significantly. (See Amy’s comment below).

As body parts go, the ovaries aren’t quite as enticing in our breast-obsessed culture, so prophylactic oophorectomies don’t garner quite the same amount or type of media hype.

5.  It should also be stated that, of course, a woman can take some time to think about things for a while.

Decisions don’t have to be made over night; in fact, they shouldn’t be. These decisions are huge, so no one should feel rushed or pressured. When a woman learns she is BRCA+, it can be pretty darn unsettling to say the least. The decisions she must make can be quite daunting.

If you find yourself to be in this situation, it’s vital to gather all the best information you can get your hands on, weigh out the pros and cons of every available option and meet with a genetic counselor (before and after testing as well) and other doctors to help you decipher stuff. After that, take some time (as much as you need) to absorb and then process it all.

Formulating a plan, your plan, takes time and effort.

After you’ve done these things, then go ahead and make the decisions that feel best for you.

Have you ever met with a genetic counselor or might you consider it regarding this or any hereditary health issue?

If you learned you were BRCA+, would you consider surveillance as an option?

Do you believe knowledge is always power?

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So You're BRCA+, Now What?

23 thoughts to “So You’re BRCA+, Now What?”

  1. A very educational and important post. Thanks for tackling this. I was not BRCA positive, so I didn’t need to see a genetic counselor or consider prophylactic surgeries. It’s best to keep in mind that prophylactic mastectomies not only garner media hype, but also can be devastating to a sexual partner, who may or may not voice his or her displeasure about it. You are right that removing ovaries doesn’t pack that same emotional punch.

    1. Jan, You make an important point. These decisions can greatly impact relationships. Ultimately a woman needs to do what feels right for her, though of course the opinions of her partner certainly matter too. Thanks for reading and commenting.

  2. What bothers me most is that women who have undergone prophylactic mastectomies are portrayed as heroes, but nobody talks about the emotional impact of having to live without your breasts, which are a key part of feminine identity. Angelina Jolie who was supposedly speaking on behalf of BRCA women everywhere minimized the emotional consequences. Also, I wish there would be an honest discussion about why the doctors often push for mastectomies when the first line of treatment is officially surveillance and what is the relationship between these choices which, as you say, should be entirely personal, and the fact that it is a lot cheaper for the hospitals to perform one surgery than to pay for your surveillance your entire life.

    1. Jasna, Well, to some they are heroes. And of course, others might not see them that way. Everyone has their own opinions. I agree that Angelina Jolie sort of glossed over the emotional aspects of all this and perhaps made it all sound too easy. It’s not. Giving up a piece of your anatomy is no small thing and it should never be downplayed. On the other hand, some family histories are so cancer laden, prophylactic surgeries sometimes are the lesser of two evils. If your doctor is pushing you toward mastectomy when you really prefer surveillance, you probably need a new doctor. I hadn’t thought about that cost factor that you mentioned… No matter what, a woman needs to think things through and make the best decisions for her. Thanks for sharing your thoughts.

  3. Thanks so much for highlighting the options for BRCA positive women beyond the one that gets the most media coverage, namely prophylactic mastectomy. As a BRCA positive woman who has not yet had cancer, I had my ovaries and Fallopian tubes surgically removed but am doing enhanced surveillance for my breast cancer risk, along with recently adding chemoprevention with tamoxifen. The prophylactic mastectomy route is actually less common than surveillance, but one would certainly not know that from reading stories in the papers. Thanks for illuminating some of the other aspects that often get ignored. One quick comment. Tamoxifen can be used as a chemoprevention method even if one has been through menopause. That may be a change from earlier practice perhaps, because I have seen some comments to that effect elsewhere, but it is currently being done. Thanks again for the very constructive post

    1. Linda, Yes, the prophylactic mastectomies do generate the most hype, especially when celebrities are involved. It sounds like you are managing your risk in the way that’s best for you and that’s as it should be. Thanks for making that point about tamoxifen. It’s good to be aware of all the options. Thank you for reading and commenting. I appreciate your feedback and helping with that illumination you mentioned.

  4. My uncle made a “cancer tree” that went back to my great grandparents. Since there were on average 10 children per couple, it was rather extensive and filled with pockets of one cancer or another. The geneticists were excited. I didn’t test positive for BRCA but the geneticists stated I probably would test positive for a gene that hasn’t been discovered yet. I was able to open many of my families records and tissue samples for study. My gift to the next generation.

    1. Mae, I think there are many genetic secrets yet to be unlocked. Sounds like your “cancer tree” is pretty full of some secrets of its own. Thanks for sharing.

  5. Thank you for a really interesting piece Nancy. I have always thought I may be BRCA positive due to my mother’s early onset breast cancer. I was never allowed (by genetics) to be tested as I don’t have any other family alive or contactable so my history was ‘too weak’ to be considered high risk. It was only last year with my own diagnosis at 40 years old that I was finally tested and found to be BRCA2 positive. I had always believed I would have no hesitation in opting for the prophylactic bilateral mastectomy but now I’m faced with it I have changed my mind and am now going with annual surveillance (MRI and Mammogram), chemo-prevention (Tamoxifen) and total hysterectomy (as opposed to oophorectomy due to cervical issues).
    Although I agree with the emotional attachment to breasts argument to a large extent, I think it’s also important to highlight the difference in screening techniques. Ovarian cancer is so much more difficult to detect until symptoms present at a late stage, the screening is unreliable at best whereas breast screening and surveillance has shown to be as effective on life expectancy terms as mastectomy. Obviously it won’t STOP cancer but will detect it at an early enough stage to generate a positive prognosis. The screening for ovarian cancer is still to unreliable to give me the peace of mind that hysterectomy (or oophorectomy) will give me.

    1. Debbie, Thanks for your very insightful comments. It’s interesting that you always had the gut instinct telling you that you were probably brca+. I’m glad you are choosing the option that best suits you. And you’re right about the difficulty in screening for ovarian cancer. Good luck with your surgery, or maybe you already had it? Thank you for adding to this discussion. Comments are so helpful to others reading.

  6. Great Post Nancy!

    Going to add:

    *Removing the ovaries prior to natural menopause actually cuts your breast cancer risk in half.

    *There are currently no accurate surveillance methods to detect ovarian cancer. Transvaginal ultrasounds and CA-125 blood marker tests can only be used as TOOLS.

    Amy Byer Shainman
    BRCA Health Advocate
    BRCA1 Positive, PREVIVOR

    1. Amy, As I mentioned in the post, removing the ovaries when a woman is past child-bearing is the standard recommendation for the exact reasons you mentioned. Thanks for the addition.

  7. I had BRCA testing before I made my final decision about whether or not to have a mastectomy. I was not positive which was helpful in that I didn’t have to be the bearer of bad news to my sisters, but it didn’t really change my decision about the mastectomy. I think if I were in a position like Angelina Jolie, with a mother who died so young after cancer, I would do what she did. It’s a tough decision and very personal. Your insights and info are helpful for anyone faced with this tough choice.

    1. Claudia,
      Curious–Did you receive genetic counseling? Did you test via your regular doctor? Were you just tested for BRCA or other mutations too–do you know? I just chimed in because of your family history I don’t want your sisters to have a false sense of security simply because you are BRCA negative. I do hope your sisters are still vigilant on their own screenings and have been counseled themselves as your family history alone (absent of known mutation) may still put them at higher cancer risk than the general population.
      XOXO Amy

    2. Claudia, So have there been other family members with cancer? And as Amy asked, did you receive genetic counseling before being tested? Usually they don’t suggest testing with just one case, that’s why I’m wondering… It’s good you tested negative, but as Amy mentioned, your sisters still should be diligent as far as staying on top of things. Thanks so much for sharing.

    3. Hi Nancy and Amy, The team at my oncology center did the test and I did receive counseling from them. I was deciding whether or not to go ahead with bilateral or single mastectomy and asked if we should consider it and they said they would. I had a cousin with Breast cancer and my dad had prostate cancer (although in his very late 80s) plus with the fact that I had 2 different lumps found in 2 separate quadrants of my breast, my insurance co. covered it. I know my sisters aren’t completely out of the woods, but if I had tested positive, I know they both would have been even more worried about getting it themselves. I know both my sisters are very concerned as well, and both stay on top of their own breast health, even more so now that I’ve had breast cancer. Thanks for caring enough to ask.

      1. Claudia, I’m glad you were offered counseling and also to hear that your sisters are diligently staying on top of things. Thanks for the additional words and of course we care!

  8. Nancy, this is an excellent, educational post. Thank you for tackling this.

    I did see a genetic counselor because believe it or not, Ashkenazi Jews like me are specifically prone to three mutations of BRCA1 and BRCA2. So my geneticist, who was wonderful, did a specific panel on those particular mutations, not a panel on the BRCA1 and BRCA2 mutations in general. It’s complicated, and I don’t fully understand it all. Here’s a link about Ashkenazi Jews and their specific mutations.

    Anyway, I was SCARED to death to get this testing done, but I knew I had to, especially at the urging of my oncologist. . So I did, and the waiting was agony. My oncologist said if I were positive, my ovaries would have to go.

    Turns out, I was negative for these mutations, but deep down inside I wonder if I should’ve gotten the regular panel. Maybe I’m BRCA positive after all? But my geneticist reassured me that the Ashkenazi panel was enough, as I would most likely have a mutation there if at all.

    I try to be at peace with the decision to get genetic testing. I did get good news, but I’m still nervous about this whole thing.

    1. Beth, I’m glad you did have counseling and did do the test. I know what you mean about still feeling apprehensive about the whole deal. I’m sorry you’re still nervous about the results. Thanks for sharing your experience with genetic testing and for sharing the link too.

    2. Hi Beth,

      Is it a certified genetic counselor you went to see? I would call that genetic counselor back and at least ask WHY she didn’t run the whole panel? Was it a $$$ thing? or other reasoing? There is also something called BART testing for those who previously tested negative for BRCA. You definitely have a right to ask about all of that.

      I have learned from my advocacy work that you may not be who you think you are…
      For example, my dear friend Kristin who passed away in 2010 was raised Protestant. Church every Sunday.

      And guess what? She carried one of the 3 Ashkenazi Jewish Founder mutations. Her counselor had run the whole panel on her…thankfully.

      If you are unhappy with the answers that counselor gives you…you can always find another counselor in your area by going to type in zip code and subset is cancer. also does counseling via phone.
      XOXO Had to chime in Nancy!

      Amy Byer Shainman
      BRCA Health Advocate
      BRCA1 positive, Previvor

  9. Amy,

    Thank you for this information. I so appreciate it. I don’t know if a certified genetic counselor is the same thing as a doctor specializing in genetics, but I saw the latter. The doctor said the Ashkenazi panel would suffice, but she did leave it up to me to choose which panel, and I chose the Ashkenazi one. Could have been a mistake.

    I think I had a false sense of security after the negative results; she told me that my chances of getting ovarian cancer are the same chances of my next-door neighbor getting it.

    I’m going to see my primary care physician and ask about BART testing. I’m not completely satisfied, and you’re right: I have a right to ask for these things. I want her to refer me to a different genetics doctor, and I want to do the whole panel.

    I’m sorry about your friend who passed away. It’s amazing she tested positive for the Ashkenazi mutation. Perhaps she had some Jewish heritage along the way.

    Thank you so much for giving me this wonderful information. I will be acting on it.

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