“When I was diagnosed, there really wasn’t any community of survivors and previvors that was present on social media like it is today. I didn’t feel like I was adequately informed about my options.”
Marnie’s mother had breast cancer when she was forty years old. When Marnie was in her thirties, she had her own brush with breast abnormalities in 2002.
“I had a lumpectomy to remove some calcifications. It was really frustrating because they basically didn’t do anything. They didn’t tell me anything, they basically said ‘we got it all out’ and sent me home,” she said.
Her OB-GYN recommended that she undergo BRCA testing, but insurance refused to cover it. Marnie remained untested until 2013, when insurance protocols changed. It was then—ten years later—that she learned she carried a BRCA 2 gene mutation.
In the following decade, Marnie managed thyroid disease with multinodular goiters that became thyroid cancer. She had her whole thyroid removed in 2008.
“Five years later, I found out about the breast cancer gene mutation, and I sort of followed that same philosophy—when in doubt, take it out.”
Marnie underwent bilateral, nipple-sparing mastectomies with implant breast reconstruction. Her initial reconstruction did not go well. She had complications that related to thin skin, implant positioning, and a porcine product that was placed under her skin to reduce some visible rippling. After several revision procedures and a hospital stay to address a staph infection, Marnie’s implants were still improperly positioned, she was uncomfortable with their size, and one had fallen beneath her armpit.
“My boobs were completely in different directions. One was sitting really low; one was sitting really high. I didn’t even really look at them. I just threw on a bra and went about my business, took some Advil and moved on.”
She was also living with chronic pain.
“I couldn’t find a pillow that was comfortable and natural and fit my body the way that I needed it to, so I worked on designing the Billow, a pillow for mastectomy patients,” she said.
Marnie’s work on the Billow included extensive conversations with medical practices. As she became more involved in the breast cancer community, she decided it was time to make a drastic career change.
“The patients I met really wanted someone to do nipple and restorative tattooing. I thought if I could design a pillow, I could learn how to do nipples. It was therapeutic for me and a good respite for me as I shifted focus from myself and my body to other people.”
She left her career in banking and finance to train as a medical tattooist. During that labor intensive training and work, her chronic pain and implant malposition impeded her progress. She felt mentally and physically healed enough to have what she hoped would be a final surgery. This time, she had more information.
“When I was diagnosed, there really wasn’t any community of survivors and previvors that was present on social media like it is today. I didn’t feel like I was adequately informed about my options. I only spoke to one surgeon, and I should have spoken to more surgeons.”
She chose a new surgeon, who removed the old implants and porcine tissue in her chest and placed smaller implants in appropriate positions in June of 2021. After surgery, she learned that her old implants were not only malplaced but mismatched. Her new breast reconstruction was life-changing.
“I can’t believe I waited so long, but I’m so happy that I did it. It was just a relief to get those things out of my chest, to get the porcine skin out of my chest, to get better, upgraded implants, and just to feel relatively normal again.”