Patients decline postmastectomy reconstruction

In 2018, Hanna learned that she carries a mutated breast cancer gene in her body. This dramatically increases the odds of her developing breast or ovarian cancer. Immediately after the diagnosis, her doctor told her about the possibility of implants should she opt to have tissue removed.

"You do not have to live without breasts," he told her. He handed Hanna a pair of implants to see for herself. 

"I was totally overwhelmed at that moment," said Hanna, who is now 39. 

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Hanna's uterus and ovaries were removed. A follow-up examination of her breasts then revealed that she had a tumor. The diagnosis left Hanna in shock. Her mother had died young of ovarian and breast cancer. Hanna, who has a 9-year-old son, had a double mastectomy to minimize the risk of developing cancer at a later stage.

"My friends tried cheering me up," Hanna said. "They told me I should just get implants." Her doctor recommended them, too. Though Hanna felt overwhelmed by the idea of artificial breasts, she eventually agreed to the procedure.

The result was not at all what Hanna had expected. Her new breasts felt numb and cold — so cold, that Hanna found herself wearing a woolen protector in winter, just to keep them warm. Hanna said her implants became infected several times, leading to tremendous discomfort. She put up with the implants for 10 months. But when a suspicious-looking lymph node was discovered during a checkup, her doctor ordered the implants to be removed.  

'Hardly recognized myself'

Hanna endured numerous medical complications during this period. At one stage, her doctor suggested forming small breastlike mounds from her own tissue. This, however, would have entailed other potential health risks, including infection or the possibility that cancer could develop in the tissue. "He gave remaining flat as the final option, and added on top of that that he could not imagine that I would want to live my life like that," Hanna said. "You could tell he didn't want that." She said she had a week to make up her mind.

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Her partner at the time wanted Hanna to have breast reconstruction. "He was more concerned about our sex life than my illness," Hanna said. After countless rows, the couple split up just before her scheduled surgery. "And on that day, I could truly, clearly decide for myself that I did not want some artificial breast implant," she said. "I was suddenly free to make that decision all by myself."

Hanna had a tough time adjusting to her physical appearance after the surgery. "I was shocked by my reflection," she said. "I hardly recognized myself." She broke down. "The pain of my lost breasts hit with full force," she said. "I had felt these feelings for a long time."

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Fighting the stigma

Over time, Hanna has grown to love her new self. Above all, she is happy to be healthy. But she is irked that women who have opted against breast implants or prostheses are stigmatized by society. "No longer having breasts seems to be more shocking to people than the fact I had cancer," Hanna says. "I often hear lines like 'what you had to go through — and now you have to live without breasts, too.'"There is great dismay about my breasts being gone rather than just asking how I'm doing."

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Hanna has found support in the organization Ablatio mammae (AMSOB). Named after the Latin word for mastectomy, AMSOB brings together women who have had their breasts removed. AMSOB is advocating for doctors to stop pressuring  patients to have breast reconstruction done after mastectomies.  "Women should be given a choice about how they want to live, and an honest medical appraisal of their options," Hanna said. Doctors must be upfront about the medical risks that breast reconstruction can entail, she added. Many AMSOB members believe that more women would choose not to undergo further surgery if the option of leaving their bodies as-is postoperation were less stigmatized.

Wolfram Malter, who heads the University of Cologne's Breast Cancer, said most doctors did not inform patients about the option of forgoing reconstruction, or only discussed the matter when patients requested it. "The removal of a breast is purely legally the removal of a limb, and that is naturally always a decisive measure," Malter said. "And it is possible that that is something that surgeons are trying to avoid."   

Hanna and other members of AMSOB want patients informed of all possible options so that they can make well-informed decisions. They also want doctors who work iun the field to develop and master techniques so that such surgeries have both a medically successful and aesthetically pleasing result.

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Hanna said she was happy with the work of her surgeon. She has started a new chapter in life and can continue caring for her son. He occasionally finds it odd when he sees people with breasts. 

This article was adapted from German by Benjamin Restle.