Lilith’s Story

"I still feel beautiful and sexy, and I have a lot less anxiety. It’s the idea that if I do get cancer I’ll know that I’ve done everything in my power not to.”

© Image Credit

“When I look back I think it was the best decision I’ve ever made to go ahead and have this procedure done. I still feel beautiful and sexy, and I have a lot less anxiety. It’s the idea that if I do get cancer I’ll know that I’ve done everything in my power not to,” Lilith said as she reflected on her decision to undergo risk-reducing bilateral mastectomies with DIEP flap breast reconstruction in 2016.

While Lilith is happy with her body and her choices now, the circumstances under which she made those decisions were not optimal, especially by risk-reducing standards. Lilith had a family history of breast cancer. When she learned about genetic testing in 2014, she was eager to know whether she carried any harmful mutations. She was also in her early thirties, in the middle of a high-risk pregnancy with her second child.

“I’m an instant-gratification type of person, so when I found out that there was information that could help me, I was like ‘I want to know now!’”

picture of patient
© Image Credit

Lilith made the unconventional decision to be tested during her pregnancy. Testing revealed a mutation that put her at an elevated risk of developing breast cancer. The youngest of six sisters, her family was not supportive: her sisters saw her decision to test as pressure for them to do the same. For them, the information was a harbinger of suffering rather than an opportunity to be proactive.

“One of my sisters cursed me out the day I found out, but eventually she got tested and came back negative. Other family members came on board and they accepted it. One of my sisters has breast cancer now. She still hasn’t gotten tested.”

In the meantime, Lilith filed her mutation in the back of her mind until after she gave birth. When her son was about a year old, a woman who had been pregnant at the same time was diagnosed with hereditary breast cancer postpartum and passed away. Lilith felt called to action.

“That box that I had locked away was rattling. I wasn’t going to monitor, because it almost made me feel like I had to be waiting, and that gave me way too much anxiety.”

Lilith began to research. She evaluated her surgical options with particular rigor, because she has multiple autoimmune conditions. Her experiences with those conditions indicated that her body would not tolerate foreign bodies, like breast implants.

DIEP flap breast reconstruction offered her a comfortable option. She was relieved to learn that she could have breast reconstruction using her own tissue. She hoped this approach would work better with her sensitive immune system.

“I came across DIEP flaps, and I was like I want that procedure. I already had the extra weight from pregnancy, it was my own body, and I’m used to my own body. That’s one of the reasons I went with a DIEP flap instead of an implant surgery. It’s really important to mention the options that are out there for women who don’t think they can tolerate the foreign materials inside their body.”

Lilith’s insights about her own body bore out as she expected. Her DIEP flap breast reconstruction was successful. While the initial recovery was challenging, she said she has been feeling great since—physically and emotionally.

“I’m so happy, and I’m happy that I made the choice to have this specific procedure, because having my own tissue makes me happy when I look at my own body.”

Lilith’s story was featured in the PBS Documentary, “Inheritance.” Her book, The Beautiful Defect, offers an intimate look into her personal story. She said she shares her experiences to help others in hopes of leaving the world a better place.