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?