My genetic test is negative. That means I do not have a genetic mutation that caused my breast cancer and that my sister and children likely do not have a defective gene. It does mean I now have no idea why I got breast cancer. It could be sporadic or it could be familial (a family connection that cannot really be traced). This will remain an unknown.
The negative result is good news. But it leaves me a bit confused and lost. Had the test been positive, I knew what I would do — remove both breasts and ovaries too. Doing so would give me a 90% chance of not getting cancer in these two areas. Without the surgeries and with a positive test, there is a 60-80% chance of getting these cancers. With my negative test, my chances are not so high — but there is still a chance. And since I am young, I have many years to have a recurrence or a new cancer. To still remove my breasts and ovaries would give me that same 90% outcome, with other implications (two major surgeries and possible breast reconstruction, early menopause and many years of bone loss, no more children, etc.). I am a worrier so perhaps these surgeries would give me peace of mind. Perhaps this is a radical approach and I will be fine as is. So goes my next personal debate.
I will meet with my OB/GYN on Monday for some screening to look at my ovaries. I will have a pelvic exam, an ultrasound, and a test called CA 125. This is the only screening test used to diagnose ovarian cancer — and it’s not very good. There are many false positives and negatives which make it inaccurate. But it’s the only real tool available. So I will have this test done and see what comes of it. Unfortunately, ovarian cancer is typically caught late (in stage three or four) because of poor screening. Many women find out they have it because they start to feel symptoms. A reason to have my ovaries removed, maybe. Removing the ovaries also cuts down the risk of breast cancer since breast cancer can be fueled by hormones and hormones come from ovaries. Breast cancer is easier to screen — with self-exams, mammogram, and ultrasound — but even if caught early, like mine was, the journey is still cumbersome.
My plan for now is to talk with my oncologist, my OB/GYN, a psychologist, and a woman I just learned of who had her breasts and ovaries removed. She is in her 30s also and decided to have these surgeries as a prophylactic measure. Just as she opted for the surgeries, I know many women go on to live full and healthy lives after breast cancer — with their breasts and ovaries in place. It’s a personal choice. I just don’t know yet what my choice will be.