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I’m one of the lucky ones. I have the knowledge and resources to prevent it.
It was way back in 1999 that I found out that I have the BRCA1 genetic mutation. The BRCA mutations were only discovered a few years before that. 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.
Most women are hit with this bomb shell later in life. I was young and 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. Scary stuff!
It is hard enough struggling through huge decisions without your loved ones questioning every move. There are huge decisions revolving around whether to have preventative surgery. Whether to have the painful reconstructive surgeries. Should you do it before having children? Should you even have children 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. Then they can choose whether to be tested as adults.
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? I didn’t have to fight to see the appropriate doctor each time a suspicious lump revealed itself. Fighting fear and denial were difficult enough obstacles.
Critical amounts of estrogen were removed from my body during both my hysterectomy and mastectomy. Both had 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, I’m passed that.
I no longer have the constant fear of an upcoming mammogram. There are no more waiting for results, being called back, biopsies, statistics, and 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.
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. 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.
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:
Beyond the Pink Moon on Facebook (closed group)
BRCA1 or BRCA2 Genetic Ovarian & Breast Cancer Gene (closed group)
FORCE: Facing Our Risk of Cancer Empowered
Prophylactic Mastectomy support group on Facebook
Susan G Komen Breast Cancer Foundation
Please share any other resources in the comments below. Your stories are always welcome!
I ended up undergoing a hysterectomy, mastectomy, and 6 additional reconstructive surgeries. Only my last surgery in 2022 was cosmetic as far as I’m concerned. I am now living and loving a flat and fab lifestyle. I’m more healthy and athletic than ever before!