Angelina Jolie’s disclosure of her choice to remove both breasts spurred me to share my story about deciding not to test for the BRCA gene mutation that prompted Jolie’s decision.

I was thirty years old when diagnosed with early stage breast cancer. In 1992 the options for treating my ductal carcinoma in-situ were either a lumpectomy with radiation or a mastectomy with the option for reconstruction.

I had no interest in radiation and amidst grieving the loss of my mom (who’d recently died) and my breast, I didn’t have energy to deal with the added physical and emotional stress of adding something new to my body. I choose a mastectomy without reconstruction. At the time I thought perhaps after I had kids I’d have both breasts done to match!

I never had kids, but never felt the need for reconstruction either. My left breast keeps me and my husband happy and my prosthesis works just fine for providing a matched set when needed.

At my semi-annual breast check a few years ago an associate of my dear doctor Armando Guiliano (whom I love and highly recommend to anyone seeking a great breast surgeon) suggested I consider genetic testing. She briefly explained what it involved and why it was recommended.  I asked what treatment would entail if I tested positive for the mutation. She very matter-of-factually stated “Prophylactic removal of both ovaries and the remaining breast.”

Shocked! I asked if there weren’t any less extreme options?

She said that the breast could continue to be monitored as we’d been doing but no comparable methods for the ovaries existed. She handed me some literature, said if I had any questions to let her know and left the room saying “I’ll be back in a few minutes with Dr. G.”

When they returned I greeted Dr. G. with a big hug and chatted a bit as he perform my exam. After a few minutes I mentioned the genetic testing recommendation. “Yes” he said, “we weren’t doing that when you were first diagnosed but it would be a good thing to consider now.”

“That’s all well and good,” I replied, “but if I test positive the treatment options aren’t very appealing. How would you like it if someone recommended prophylactic removal of your testicles?”

We all got a good laugh out of that, but it presses a point. As Dr. Susan Love points out  “We really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”

You can be sure that if the likelihood and rate of survival of testicular cancer in men (1 in 250 men will be diagnosed with an 80-100% rate of survival depending on stage) were comparable to that of breast cancer for women (1 in 8 women will be diagnosed with a 15-93% rate of survival depending on stage) someone would have developed far better measures for monitoring and treating it than they’ve done for female cancers.

Barbaric!

I decided that even if I did test positive for the mutation, I wouldn’t remove my ovaries or my remaining breast. Since I don’t have children, like Jolie who lost her own mother to breast cancer at age 56 and said she did it so her children wouldn’t have to lose their mom they way she did, I don’t have that weighing on me. If I did, perhaps I might have made a different choice.

Beyond that, I don’t want to live in fear of death. As Joel Shuman and Brian Volck point out in Reclaiming the Body: Christians and the Faithful Use of Modern Medicine, when it comes to extreme measures of avoiding illness and prolonging life “few people seem interested in asking whether or to what extent such an aim is appropriate for creatures of a providential God.”

The additional issues of cost ($3000 which might be paid for in my case, but not necessarily) and the audacious ethics of  the only company who currently offers the testing (their patent on the BRCA genes is currently under consideration with the Supreme court) also factored into my decision.

The bottom-line question was: What difference will knowing make? Testing negative for the mutation wouldn’t make any difference to how I live each day. Testing positive might increase my vigilance about self-care and monitoring, but I already do everything I’m “suppose to” in terms of prevention.

I’ve always said that I reserve the right to change my mind about reconstruction. And I feel the same about testing for BRCA.

But for today, I am alive and well, being of service to many, and full of gratitude for the goodness of life that has come to me. If one day I decide two breasts are better than one or knowing my genetic status would give me a better life, I’ll go for it.

But until then, I’ll remain a one-breasted woman committed to living in the love of a providential God that has no room for fear of death, disease, aging, accidents, and whatever else might stand in the way of fully loving and enjoying my life, just as I am.