Question from judyowns1: I lost my mother at 56, my sister at 47, I have aunts and cousins on my fathers side dieing left and right of breast cancer. 8 years ago my twin sister and I both had prevenative breast removal and reconstruction without any diagnosis of cancer. We turn 56 next month. It gave us both a new lease on life. We felt we dodged the bullet. OR did we? what are the stats in these cases of us still geting breast cancer?
Response from Deborah K. Armstrong, M.D., Johns Hopkins Kimmel Cancer Center: This approach is not for everyone but you are correct to recognize that with this surgery you significantly reduced your breast cancer risk.
The best information we have about purely preventive mastectomy is that it decreases the risk of breast cancer by over 90%. Why not 100? Because not all breast tissue is contained in the breast mounds. Some small (microscopic) nests of breast cells can be found in other areas of the chest and can give rise to cancers.
Your situation is somewhat unique in that you have breast cancer on both sides of the family, maternal and paternal. Many people and even some physicians don't realize that genes that put people at risk for breast cancer can be inherited and passed with equal frequency by men and women. The genes are more silent in men but they can pass them on to their male and female children, just like a woman can. In about half of families like yours with multiple cases of breast cancer spanning generations, we can identify a gene that significantly increases breast cancer risk. These genes are called BRCA1 and BRCA2. The benefits of knowing whether a mutation in one of the BRCA genes is found in your family is that those who want to know if they have inherited the gene can have testing. Those who have inherited the gene mutation can increase screening or take preventive measures, like you did. Those who didn't inherit the high risk gene can be reassured that their cancer risk is more in line with the general population risk. Some people will prefer not to know whether or not they have a gene that puts them at higher risk. Making an informed decision that is right for an individual is more likely if those considering testing are counseled first.