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Life with the Girls

The Mastectomy Whisperer

Though her prophylactic mastectomy is behind her, Lambeth Hochwald will never stop helping other women facing the procedure. Find out why in this month’s “Life with the Girls.”

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Earlier this year, I got a note via LinkedIn from a reader of a mastectomy-related essay I wrote for Glamour. I replied to her immediately.

Despite the fact that she’s a decade older than me and 14 years behind me on the path to a prophylactic mastectomy, our shared BRCA status unites us. In fact, we’re friends now.

Since my mom and my aunt developed breast cancer and, one by one, we learned that we carry the high-risk BRCA mutation, I have become a mastectomy whisperer of sorts. It may sound like a weird side gig, but I consider it my duty to help others navigate the complicated and painful path to coming to terms with the implications of being a BRCA carrier. (This mutation, known as either BRCA1 or BRCA2, ups your lifetime risk of developing breast and ovarian cancer by a considerable percentage.)

Why not move on, now that I’ve graduated from the panic I felt when I discovered that I have an error on my DNA strand? After all, that genetic glitch likely stretches back to Dora, my great-grandmother, an immigrant who came to this country and died at age 53 of an ovarian cancer so insidious that they ‘opened her up and closed her up,’ according to family lore.

Why not focus on other things now that I no longer need mammograms or breast MRIs (my original pair has been replaced by a reconstructed duo), and I had my ovaries and fallopian tubes removed when my now-15-year-old son was just three?

I guess I can’t because my BRCA status is as much a part of me as the blue of my eyes. I watched my mom and aunt become fierce survivors grappling with the fact that they could have avoided everything breast cancer entailed if they had only had the chance—like me—to learn their risk before receiving their diagnoses.

While I joke that I got my medical degree on Google, I actually have pretty in-depth firsthand expertise with surgical reconstruction. I ended up needing 10 reconstruction surgeries and a repeat mastectomy (look that one up; it’s pretty much unheard of) in my quest to recapture the 36Ds that had long been a part of me. So if you have a question about drain management, wound complications and the best foods to eat to avoid the post-op ‘clog-up’ from all the medication you need to recover from long and arduous surgeries, I can basically tell you.

I can’t move on because I have covered breast cancer for decades as a journalist and consider it to be my most important beat. When I get an assignment, whether it’s about the latest advances in treatment, an interview with a survivor or a chance to share my experiences, I jump at the chance. The interviews are emotional. Often, they feel like the only time it would be appropriate to share that I understand everything, from how scary it can be to wait for pathology reports to why it can be helpful to tuck drains into a pocket so they don’t get twisted and poke into your skin.

I also share that knowledge at a BRCA support group I attend, where women of all ages gather to talk about surgeries, about our fears, about new data and research. I told my new friend about this support group because you can only find out from others who understand just how hard these choices can be.

It doesn’t stop there. If a friend of a friend needs advice, I give it as freely as I can. I’ve talked through the most personal of choices—whether to pick breast implants or a flap procedure that uses your own skin—and even showed one stranger my scars to help her cope with her anxiety.

Lambeth’s great-grandma Dora.

And lest I sound like I take it all in stride, of course this cancer vortex weighs heavily on me, especially when I think of the women I’ve counseled who haven’t made it. I remember often a vibrant tennis-playing mom I interviewed years ago who was diagnosed with inflammatory breast cancer and died shortly after the piece hit the newsstands. My heart breaks when I think of a woman I interviewed who developed breast cancer while she was pregnant. I lost touch with her and, a few years after her piece ran in one of the parenting magazines, her husband contacted me, asking if I could send an original copy of the story so he could share it at her memorial. The only comfort I feel when I think of those women is that maybe I brought to light how brave they were in the face of devastating diagnoses.

As for my new friend, we talked a lot about what to bring to the hospital the night of her mastectomy. A cozy blanket that reminds her of her own bed? She packed it, thanks in part to our chat. A pillow for the ride home so she wouldn’t be jostled post-op? She made sure her husband tucked it into the passenger seat. When I visited her at the hospital the next day, we looked at the mountain of supplies she’d need to treat her wounds and we laughed.

Then there’s me and my five-year-old “new” breasts that were molded from a custom blend of my own tummy fat and part of my back. At this point, I don’t really remember what my original breasts looked like, but maybe this set is even better because of what it represents: my strength to face what my family tree handed down to me, and my duty to answer the call from any woman who may need my help.

I’d like to think Dora is looking down on me, proud to know this is her legacy, too.

Leave Lambeth some love in the comments below, or share with us your own Life with the Girls story at blog@barenecessities.com. 

By Lambeth Hochwald

Lambeth Hochwald is a New York City-based writer and editor who reports on lifestyle topics and, especially, issues that affect the lives of women.