Many people encounter cancer at some point in their lives, either head-on or friend-of-a-friend style, but then there are those of us who live with cancer on our shoulders, an intruder who came much too early for our grandmothers, aunts, mothers and sisters and never left.
I never met my father’s mother. She died in 1968 after two rounds of breast cancer. My father, the youngest of five, was just 14. Nearly three decades later, in the wake of the discovery of mutations in the BRCA genes, my father’s sister received a diagnosis of ovarian cancer.
At the time of her diagnosis, my aunt asked what would have been done if she tested positive for the new mutations. A full hysterectomy, the doctors responded. That could have saved her life. Yet, at that time, she would have lost health insurance and so much else, and she had chosen not to test.
We lost her when her youngest was just 13.
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When my second (surprise!) pregnancy brought about a change in the Jewish prenatal testing, I found I was a carrier for Canavan disease. Besides being a horrendous disease, Canavan’s has the same occurrence in the Ashkenazi Jewish population as BRCA — 1 in 40 Ashkenazi Jews carry it. Luckily for us, Canavan’s is recessive and, therefore, since my husband is not a carrier, our children are not at risk. But the finding required genetic counseling, where my need for BRCA testing became even more evident.
I always knew I would test for the genetic mutations that put me at risk for hereditary breast and ovarian cancer, also known as HBOC. But being pregnant with my second daughter and knowing my body was already harboring a deadly mutation pushed me into action.
One week before my 31st birthday, still breast-feeding a 4-month-old, I found out the fear lurking in my mind all those years was a very real threat. By the time I am 70, I have an 87 percent chance of developing breast cancer and a 54 percent chance of developing ovarian cancer.
If your brakes on your car had an 87 percent chance of failing, would you drive it? If you had a 50/50 shot of your flight crashing, would you step on the plane?
My options aren’t many: surveillance at six-month intervals in hopes they catch any cancers early enough to treat; chemoprevention with its own side effects; or prophylactic mastectomy and oophorectomy in hopes of removing the threatening tissue before it turns on me.
For many women like me, pursuing surgical measures at the earliest point is their way of taking back control, of potentially eliminating a foe that took from them the most important women and men in their lives. For me, taking back control meant taking a measured and researched approach — and to take time for me.
I enrolled in the premier research institute for my surveillance and discussed my timeline. I wanted to finish breast-feeding; I wanted to decide if we would have a third child, but I wanted it on my own terms. I did not want BRCA making decisions for me or my family.
It was and is a regular discussion in my house, debating the pros and cons, wondering about next steps. Most often in the first two years, we debated if we should have another child, knowing the risks to me and to the baby someday.
Mammograms, MRIs, transvaginal ultrasounds — every one filled with anxiety and fear, but thus far, every one clear. Every conversation at home turned to what to do. Finally, my husband said to me, “You will never regret having another child. You may regret not trying.”
So we set a plan: Get a clean MRI and try for the six months between surveillance. If no baby, I would move forward with surgeries.
Not long before that six-month mark, I saw two lines. I was torn. In a way, I had come to terms with our family. I mourned each month, but started telling myself maybe it was for the best. Yet here she was.
Being pregnant and BRCA1-positive brings its own hurdles. I can no longer be screened via mammogram or MRI. I have to rely on manual exams of ever-changing breasts and hope nothing happens in the 10 months of pregnancy. I have to remind myself she’s worth it.
So I look at the ultrasounds. I look at my 5-year-old and 3-year-old. And I remember that they are my reasons. They are why I found out. They are why I write. They are why I educate others. I want to make their options better than mine, because each of them has a 50 percent chance of inheriting the same mutation.
Mom guilt is very real, and the possibility that I’ve passed along this mutation to any of my three girls — or even all of them — weighs on me. But BRCA is not a death sentence for me or for them. Prophylactic mastectomies and hysterectomies weren’t an option for my grandmother and aunt, but they are for me. Hopefully, medicine will achieve more than removal of body parts so my girls can be spared that; hopefully, I am here to see those options.
Until then, I will do what I need to do and continue to alert others to their risk. If you have lived your life with the lurking intrusion of cancer in your family, please consider pursuing genetic counseling and testing. We no longer face the hurdles my aunt faced decades ago. We have protection, and we have coverage.
If you’re asking yourself, “Should I be tested?” I then ask you if you have a history of the following:
— Ovarian or fallopian tube cancer at any age
— Breast cancer at age 50 or younger
— Breast cancer in both breasts at any age
— Both breast and ovarian cancer
— Male breast cancer
— “Triple-negative” breast cancer
— Ashkenazi Jewish heritage and breast cancer before age 60
— More than one relative on the same side of the family (mom OR dad’s side!) with any of these cancers:
— Breast cancer
— Ovarian or fallopian tube cancer
— Prostate cancer
— Pancreatic cancer
— Melanoma
If you can check any of those factors, you could save your own life or the lives of your sisters, daughters, nieces or grandchildren. And if your family has tested negative in the past for genes like BRCA but continue to be affected by these cancers, consider retesting. New genes have been implicated in HBOC in the past five years, and no doubt many more will come to light.
The other factor we have today that didn’t exist previously is support. Organizations like Bright Pink and FORCE: Facing Our Risk of Cancer Empowered offer resources for those of us facing this life-changing information, while support groups give in-person and online support from those who have already traveled these roads.
As nerve-wracking as it is sometimes to know my odds, it is better than living in the dark, waiting for cancer to pounce and blindside me and steal me from my daughters. My father and cousins lived through losing their mothers to this mutation. I don’t want my children know that pain.
More from U.S. News
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Living With a BRCA1 Mutation: One Mom’s Story originally appeared on usnews.com
