Prevent It

BRCA1 Previvor

I’m one of the lucky ones.

I found out that I have the BRCA1 genetic mutation way back in 1999. I was 23 and had just met the man I would build a family with. As scary as that was, I was lucky to not have lost any immediate family members to cancer. Many women don’t even know to get tested until they’ve lost a mother or sister.

I also feel lucky that I have been able to slowly learn and digest the true risks correlated with this predisposition. Most women are hit with this bomb shell later in life, but I was fairly naive and information about BRCA was still limited and quiet. It turns out that the BRCA1 mutation gave me a nearly 90% lifetime risk of being diagnosed with breast cancer and over 60% risk of ovarian cancer. Links to other cancers seem to be discovered every time I turn around.

I’m lucky that my family and friends were all very supportive of my decisions. It is hard enough struggling through huge decisions like whether or not to have preventative surgery, to do it before having children or whether to have children at all given the 50% chance the mutation will be passed on. I plan to teach my kids how to live a healthy lifestyle under the presumption that they have this mutation and then they can choose whether to be tested as adults.

I have always had good health insurance and access to the best of technology and physicians. Mammograms, MRIs, ultrasounds, biopsies…these become routine, and even with insurance, the expenses can be debilitating. Yet, how lucky I am that I have all of this at my fingertips and didn’t have to fight to see the appropriate doctor each time a suspicious lump or change in my breasts revealed itself. Fighting fear and denial were difficult enough obstacles.

I feel unbelievably lucky that there are medications to counteract the effects of surgical menopause caused both by my preventative hysterectomy and mastectomy. Critical amounts of estrogen were removed from my body during both surgeries and with immediate impacts on my mental and physical well-being. I cannot imagine going through either of those life-changing surgeries and not being in control of the hormonal changes to some extent. If you think PMS is bad, waking up one morning in full-blown menopause will rock your world…and everyone’s world around you.

While my recoveries were far worse than average for the hysterectomy, mastectomy, and three reconstructive surgeries following my mastectomy, how lucky am I to have gone from an 87% chance of breast cancer to that of an average women. I no longer have the constant fear of an upcoming mammogram, no more waiting for results, being called back, biopsies, statistics, explanations to my children…no more worrying that I might not be here for my children. Sure something might still happen to me and there is still a small chance that I will get breast cancer (or some other cancer), but only people who have lived with that fear can understand the relief. I feel so lucky to wake up each day and be able to say, “I will never get breast cancer,” after so many years of knowing I someday would. I felt it in my bones. It was only a matter of time.

And I’m so lucky to be here, to be healthy, to be a cancer previvor.

If you have a family history of cancer, I highly recommend genetic testing. That history could very well be on your father’s side like mine is. If you are of Ashkenazi Jewish descent, schedule your testing RIGHT NOW. Up to one in 400 women is BRCA-positive as opposed to one in 40 Ashkenazi Jews. According to FORCE, an estimated 90% of BRCA carriers do not even know they have the mutation that darn near guarantees she will one day get breast cancer and very possibly at a relatively young age.

Knowing my risks probably saved my life. Getting the genetic testing made it so everything that was done to monitor me and all surgeries were covered by my insurance and will make it so my children don’t have to jump through hoops if they choose to be tested. I’m thankful to have been armed with that information and despite the worry and guilt that has come with this knowledge, I have no regrets.

Even if you don’t have a family history, only 5-10% of women diagnosed with breast cancer each year have a BRCA mutation, so please don’t put off that mammogram. Self checks are great so that you are familiar with your own body, but do not rely on that; mammograms are still the best way to catch something early.

I know this is all very scary, but please don’t ignore it nor live in denial should you feel something concerning during a self-check. I’m so glad I found out my BRCA status. This has been an incredibly difficult journey for me and even if I truly am safe from breast and ovarian cancer, my three children will need me to advocate for them and protect them as they grow up. If indeed any of them inherited this mutation, there is so much they can do with that knowledge and I will encourage them to choose previvor over survivor.

Tammy Schmit

 

Here is a list of excellent resources to learn more about genetic testing as well as some of the forums that I have leaned on, making endless friends in the process:

American Cancer Society

Beyond the Pink Moon on Facebook (closed group)

BRCA1 or BRCA2  Genetic Ovarian & Breast Cancer Gene (closed group)

BreastCancer.org

Breast Cancer Support

Cancer Resource Foundation

Gene by Gene

FORCE: Facing Our Risk of Cancer Empowered

MyDestiny Foundation

Myriad

National Cancer Institute

Prophylactic Mastectomy support group on Facebook

Right Action for Women

Susan G Komen Breast Cancer Foundation

Please share any other resources in the comments below. Your stories are always welcome!