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Living With a BRCA1 Mutation: One Mom’s Story

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

10 Things No One Tells You About Breast-feeding

What Not to Say to a Breast Cancer Patient

9 Empowering Women’s Races You Should Enter

Living With a BRCA1 Mutation: One Mom’s Story originally appeared on usnews.com

Don’t Settle for Student Loans to Pay for Online Education

Online college programs are becoming a more popular choice for prospective students, with one study finding that more than 6 million students enrolled in at least one online course in fall 2015. The popularity of these courses can be attributed in part to their flexibility with working adults' schedules, students' ability to progress more quickly through online programs and, oftentimes, cheaper tuition. [See 10 low-cost online bachelor's programs for out-of-state students.]Online degrees can be beneficial to many college students, but some studies have shown online learners complete their programs at lower rates than students at traditional brick-and-mortar campuses. Individuals with student loans but no degree comprise two-thirds of defaulted borrowers. Though these numbers are not encouraging, just like for traditional programs, there are ways to reduce how much you'll need to borrow for an online program to ensure you won't become one of these statistics. Don't just settle on borrowing student loans to cover the whole cost of your program and living expenses. Instead, start thinking about how to cut costs and cover your balance in different ways, such as the following. -- Grants and scholarships: Even though you are taking an online course, you can still apply and receive grants and scholarships. But your first step should be to complete the Free Application for Federal Student Aid, commonly referred to as the FAFSA, which will allow you to receive a Pell Grant if your expected family contribution is low enough. The EFC criteria and award amounts are adjusted annually, but the 2017-2018 academic year awards range from $606 to $5,920, which could significantly lower the amount you borrow annually. Your next step is to apply for scholarships. You can start by checking online scholarship search engines, such as the Salt Scholarship Search, College Board's BigFuture and Peterson's. 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Not all students enrolled in online programs are eligible, but students at some schools -- including, for example, SUNY Empire State College and Liberty University -- are. Work-study awards are not given upfront like scholarships and grants. In most cases, they are an offer to earn up to the awarded amount if you secure an eligible work-study job. While there is a misconception that all work-study jobs must be on campus, students can work for off-campus, nonprofit or public employers as long as the work is in the public's interest. You may be able to work for a for-profit employer if the job is relevant to your course of study. No matter who the outside employer is, it will need to have an established agreement with your college for you to receive work-study funds. Remember, to be eligible for federal financial aid, you must be enrolled and pursuing a degree or certificate. If you're not working toward a credential, Pell Grants and work-study won't be option, but you may still be able to take advantage of private scholarships -- just be sure to read the eligibility criteria carefully. [Explore what to know about financial aid in online programs.]-- Pay as you go: One of the great benefits to enrolling online is the flexible schedule, which can allow you to complete your college coursework around your responsibilities. But prospective students often overlook using their part- or full-time job earnings as an option for paying for college. Almost 80 percent of college students in 2015 worked at least part time while attending classes, according to the National Center for Education Statistics. By budgeting and thinking strategically about your college costs, you can likely reduce your dependence on student loans by paying a portion out of pocket. Many -- but not all -- online programs are less expensive than traditional programs and often have shorter payment periods. Six, eight or 10 weeks are common course durations. Because of the frequency of payments in an online setting, you may be well-placed to pay as you go and possibly avoid borrowing altogether. Attending college online and avoiding student loans may be challenging, but if you are willing to put in the effort, you can limit the amount you need to borrow. More from U.S. News Q&A: Understanding Student Loan Discharge Eligibility Student Loan Refinancing Isn't Right for All Borrowers
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