Black Women and Genetic Counseling: How to Become Your Best Advocate

By Maimah Karmo

Black women are just as likely to have hereditary breast cancer mutation as white women, yet their participation in genetic counseling and testing is substantially lower. Being your own advocate is crucial with all health-related matters – especially breast cancer. You can do this, in part, by learning more about breast cancer mutations, finding out if you should be tested, and knowing what to do with your test results if you are.

What is Genetic Testing?

Three of the most well-known genes that can mutate and raise your risk of breast and/or ovarian cancer are BRCA1, BRCA2, and PALB2. A mutation, or abnormal change, in these genes can be inherited from your mother or father. While hereditary breast cancer only accounts for 5%–10% of all breast cancer cases, women carrying a risk-conferring BRCA1/2 mutation have a 55%–85% lifetime risk of developing breast cancer (compared to the average lifetime risk of breast cancer for women of about 12%). Women with an abnormal PALB2 gene have a 33% to 58% lifetime risk of developing breast cancer. With genetic testing you would give a blood or saliva sample that would be analyzed to detect any abnormalities in these genes.

You may have also heard the term “genomic testing,” which is also known as biomarker testing. Biomarker testing is for people who have cancer and it’s a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person’s cancer has a unique pattern of biomarkers and some biomarkers affect how certain cancer treatments work. Other biomarkers help doctors monitor cancer during and after treatment. If you have been diagnosed with cancer, biomarker testing may help you and your doctor choose the best treatment for you.

Do You Need Genetic Testing?

If you’re interested in genetic testing, start by learning as much as you can about your family history on both your mother’s and father’s side. A gene mutation that increases breast cancer risk is more likely to run in your family if you have the following medical histories:

  • Three or more women in your family have had breast and/or ovarian cancer, particularly if they were diagnosed before age 50.
  • A close relative has had cancer involving both breasts.
  • There is both breast and ovarian cancer in your family.
  • Men in your family have had breast cancer.
  • There is breast cancer in your family and relatives on the same side of the family have had other types of cancer.

If any of these are true for your family, you may be a candidate for genetic testing. A genetic counselor can provide more information and help you decide how to move forward. To find a genetic counselor, talk to your doctor or check with local hospitals or cancer centers. Many insurance plans will cover the cost of genetic testing.

You’ve tested positive for a gene mutation. Now what?

Testing positive for a cancer-related gene mutation DOES NOT mean you have breast cancer, and it doesn’t mean that you definitely will get cancer. A positive test result only means that your risk of developing breast cancer over the course of your lifetime is higher than it is for people in general.

If you’ve already had breast cancer, a gene mutation doesn’t mean your original breast cancer is more likely to come back. But it does mean that you’re at higher-than-average risk of developing a second breast cancer.

Your genetic counselor can help you better understand your results and well as strategies for reducing your risk and the side effects of each.

Some of your options include surgery to remove the breasts (prophylactic mastectomy), surgery to remove the ovaries (the main source of estrogen in the body), more frequent mammograms or breast MRI screenings, or taking a risk-reducing medication such as Tamoxifen, which blocks the effects of estrogen in the breast tissue and therefore can reduce the risk or recurrence of hormone-receptor-positive, early-stage breast cancer.

Reducing Your Risk for Breast Cancer

There’s nothing you can do to change your genes or family medical history. Furthermore, research has shown that aldehydes — a common class of chemicals found in car exhausts, smoke, building materials, furniture, cosmetics, shampoos and more — could increase cancer risk by breaking down they body’s defense mechanisms against DNA damage. The study showed this can occur even in normal healthy cells, but people who have inherited a faulty copy of BRCA2 are particularly sensitive to such damage.

Nevertheless, some things are still in your control. Some lifestyle changes can help reduce your risk of breast cancer. Recommendations from the American Cancer Society include:

While the science isn’t clear on how diet affects breast cancer risk, a diet low in fat, processed and red meat, and sugary drinks, but high in fruits and vegetables can certainly have many health benefits. And some studies have found that the Mediterranean Diet could be beneficial to health in general and help protect against breast cancer risk and recurrence in particular.

Be your best advocate by eating well, exercising often, and learning more about genetic testing.