The BRCA Gene and Cancer: Do You Really Want to Know?

I’ve had to tell a lot of women that they have ovarian cancer throughout my career. It’s not easy. I also routinely tell women they are BRCA-positive.  Trust me, it is much less difficult to talk about strategies to decrease or eliminate the risk of cancer than to tell someone they already have it.

Half a million women in the United States have the BRCA gene mutation, but only 4% are aware of it. In other words, 96% of woman that are at very high risk for developing breast or ovarian cancer don’t even know it.

Women with a BRCA mutation have up to an 87% risk of developing breast cancer. These breast cancers occur at a much younger age, often before women are advised to get mammograms. The only way to significantly reduce one’s risk in this case is to prophylactically remove the breasts, and many BRCA carriers choose mastectomy and reconstruction. Others opt for close surveillance with mammography and MRIs starting at age 25.

Women with a BRCA mutation also have a 44% risk of developing ovarian cancer as opposed to the 1.4% risk found in the general population. The best way to significantly decrease one’s chance is to surgically remove ovaries before cancer cells start to grow. Many women choose not to do that, or want to wait until they have completed their families. In those cases, there are a number of risk-reducing strategies.

Taking birth control pills for 5 years or longer reduces the risk of developing ovarian cancer by as much as 60%. It’s a mystery to me why pharmaceutical companies, who have made millions by advertising that birth control pills reduce acne, don’t advertise that!

It appears that the fallopian tubes are often the source for ovarian cancer cells, which is why tubal ligation, or removal of tubes, reduces rates of ovarian cancer as much as 40%.

What About Ovarian Cancer Screening?
You may have heard of the benefits of a blood test to see if you have elevated levels of CA125, which is a substance that ovarian cancer cells shed. But, normal cells that become inflamed also make CA125. The majority of women with a slightly elevated CA125 do not have ovarian cancer but have a nonmalignant condition such as endometriosis or fibroids. In addition, CA125 levels don’t increase until the disease is well established: 50% of women with Stage 1 ovarian cancer have normal CA125 levels.

Routine screening in low-risk women has not resulted in favorable results – or every gynecologist would recommend it. Women who are BRCA-positive, on the other hand, should have a CA125 test every 6 to 12 months beginning at age 25, along with a transvaginal ultrasound.

A strong family history of cancer creates a lot of stress and anxiety. Contrary to what you might think, knowing your carrier status reduces stress. You can slay the monster you see coming, but not the monster that is invisible.

For more information, I recommend the following websites:

Bright Pink: An organization for young women who are at genetic risk for breast and ovarian cancer.

Facing Our Risk of Cancer Empowered: A nonprofit organization devoted to hereditary breast and ovarian cancer.