A very personal decision with no regrets

At a birthday party recently, a friend asked me if I would hold her six-month-old baby so she could attend to her older child. I more than willingly reached for her, and I sat Kaia turned outward on my knee so she could engage with the grown-ups at the table. I was surprised when her head fell with all its weight against my left breast, and she turned her face up to look at me. To say she was angelic is an understatement. We sat like that for a few minutes. I talked nonsense while we simply stared at each other; she tried to keep her eyes from closing, focused on nothing but that space, that moment, that contentment. Kaia's mom discretely snapped a picture with her phone.

The next day, I showed the picture to my husband. We began to reminisce about our now five-year-old son. I noted that I didn't remember Theo and I sharing a moment like that when he was six months old, so relaxed and contentedly looking at each other, not even when I fed him.

"Maybe it's because I didn't breastfeed him," I said.  Right from the beginning, Theo had been fed from a bottle and by anyone who wanted to feed him. My husband insisted that our son and I had those moments. Then, observing the picture a little longer, he asked me, "Do you ever regret not breastfeeding?"  Without thinking for even a millisecond, I answered, "Nope. Never."

When I was diagnosed with a BRCA mutation after genetic testing at 28 years old, I was single, in graduate school for the third time, and completely career-focused.  There were a lot of unknowns: marriage and children were two big ones. Yet still I had to consider whether I should have preventative surgeries to remove my breasts and ovaries – decisions that could potentially affect my life as a future mother.

Many women with a BRCA or other HBOC-related mutation choose to have a prophylactic bilateral mastectomy (PBM) in order to lower their chance of one day developing breast cancer. Of course the decision isn't easy; there is a lot to take into account. How do I know if this is worth it? – maybe I'll never even get cancer. Is screening a better option? What if there are surgical complications?  What will I look like after the surgery? What about the pain? Will my partner still find me attractive? How will this affect my sex life?  And many women ask themselves, should I wait until after I have children so that I can breastfeed them?

Six years after I learned of my BRCA+ status, our son, Theo, was born. His first taste of food was from a ready-to-feed bottle of formula – just screw on the rubber nipple and baby does the rest. Eighteen months after his birth, I was diagnosed with DCIS, found during a routine screening mammography; I underwent a bilateral mastectomy a month later.

When learning about a positive BRCA or HBOC-related gene mutation, many women think about how they will handle the emotional loss of their breasts. Breasts aren't like hands or feet or other appendages that have use but aren't necessarily personal – women have strong connections to their breasts and all sorts of associations that go with them. For a young girl, a first bra might signal entrance into womanhood. For another, having a breast touched for the first time is what makes her aware of her sexuality. Yet another bemoans her breasts monthly as they swell and ache in time with her menstrual cycle. Breasts are in so many ways connected to being female: they communicate to us in all sorts of ways, and they are capable of doing an incredibly important job: they can nourish our children.

But they don't have to. The "breast is best" message is powerful in this country, and I am not trying to weigh in on the debate here. Most women I know agree that how you feed your baby is a personal decision and is based on many factors. I had spent most of my life thinking of my breasts as ticking time bombs (a metaphor commonly used in the BRCA+ community), filled with cells about to develop into cancer at any moment. But it was also hard to think about losing them, for all of the reasons I just mentioned. While many women in my position chose to nurse and see it as a way to have a lasting happy memory of their breasts (like fellow philly.com blogger, Katrina Altersitz Wells, who writes beautifully about breastfeeding her daughters on her own blog), I simply couldn't give myself a reason to connect to them more, a reason to feel even more loss.

It turned out that saying goodbye to my breasts wasn't hard at all, and I don't miss them one bit. I think it is at least in part because I made the decision not to breastfeed. It may not have been as easy mentally if they had that connection to my child.  When my son curls up on my lap now and leans his head against my breast, surgically made full by abdominal tissue that was transferred there, neither of us feels sadness or awareness that this is not the same breast we shared when he was a baby. We can both just relax and focus on nothing but our space, our moment, our contentment.

Bryna Siegel Finer teaches writing at Indiana University of Pennsylvania and lives in Pittsburgh with her husband, who is BRCA1 positive, and their son.  She is a peer support group co-leader for FORCE Pittsburgh and can be reached at brynaf@facingourrisk.org. 

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