But in 2018, the FDA still didn’t seem worried and neither was Paulette Parr—even when she noticed a pimple-size growth under her arm. She went in to have it checked, only to learn in November that she had this thing called BIA-ALCL.

Parr was 67 then, a newly retired grandmother, taking weekend jaunts to Memphis and looking forward to visiting New York City for the first time. And at first, her diagnosis didn’t sound so dire. The doctor told her, “You give me six sessions of chemo, it’ll be gone,” Calvin Parr recalls. “That relieved us really well.”

Problems with implants have increasingly complicated the health of one particularly vulnerable community: women with or at high risk of developing breast cancer.

Every year, more than 100,000 women—a quarter of breast-related plastic surgery patients—have “reconstructive” procedures, mostly after mastectomies. They don’t all have the disease; preventive mastectomies got a boost in 2013, when actor Angelina Jolie, who has a gene mutation that puts her at increased risk for breast cancer, wrote a New York Times op-ed about her decision to preventively remove her breasts and replace them with implants.

Today, such prophylactic mastectomies with reconstruction have become a reassurance for many young women who have seen their mothers and aunts and grandmothers die from aggressive cancers and who want to reduce their own hereditary risks. For these women, who don’t want to lose the femininity or sexuality associated with having breasts, implants have been life-changing devices.

“As somebody who was plagued with a fear of breast cancer my whole life, there was this amazing safety net,” says Caitlin Brodnick, a New York City comedian and the author of a memoir about her decision to have a preventive mastectomy and reconstructive surgery at age 28.

But one terrible irony of BIA-ALCL is that many women who had the surgery to reduce their risk of cancer could now contract a new type.

“To lose all the women in my family to cancer, to make this decision that is supposed to save my life—and then, just kidding! This put me at a whole other risk,” says Mia Kargen, a nursery school director in Westchester County, N.Y., who underwent the double procedure in 2014. “It was so stressful. It affects every part of life.”

Replacing implants or even simply removing (“explanting”) them requires another expensive surgery and time for recovery. In one high-profile instance, Match Group CEO Mandy Ginsberg in March stepped down from her $2-billion-in-revenue company, citing in part the surgery she had just undergone to replace her recalled breast implants.

There are separate, equally devastating effects for women like Paulette Parr and the hundreds of thousands of others who still get implants every year for cosmetic reasons. For many of them, developing BIA-ALCL has come with a side of self-recrimination and external criticism—not to mention massive medical bills.

“With this cancer, you’re judged,” says Michelle Forney, an HR manager at a financial services company who has now developed BIA-ALCL. A briskly upbeat Californian, her voice falters and breaks as she talks about the guilt she felt about her diagnosis: “I gave it to myself. I put these implants in for vanity. But do I deserve this?”

Costs for treating the lymphoma can run from $200,000 to $300,000, not including the costs of missing work or traveling for treatment, according to Mark W. Clemens. An associate professor of plastic surgery at the University of Texas MD Anderson Cancer Center, Clemens is treating many of the women who have contracted BIA-ALCL and preparing a study of its financial impact. “For patients who received a cosmetic augmentation, some insurers have policy exclusions; they will not cover a patient who’s been diagnosed,” he says.

One such insurer is Premera Blue Cross, a Washington State licensee of Blue Cross Blue Shield. A policy from March states that if a patient’s implants were placed for cosmetic purposes, removing them is covered only “if there has been interval development of breast cancer or other breast disease that requires mastectomy or partial mastectomy.” BIA-ALCL is not considered a breast cancer or disease.

Premera declined to comment on specific cases, citing patient privacy rules, and noted that the FDA does not currently recommend explantation if women have not been diagnosed with BIA-ALCL. The insurer added that it makes decisions on a case-by-case basis. “Each case has its own intricacies that guide the clinical decision of coverage,” Chad Murphy, Premera’s chief clinical officer, said in an emailed statement.

Allergan has offered up to $7,500 to cover out-of-pocket surgery costs to any woman who has developed BIA-ALCL, and $1,000 toward diagnostic testing. That’s too little, too late for women like Forney and Hollrah, who have filed suit against Allergan. “It has cost me thousands and thousands of dollars, and I have good insurance,” says Forney. “Cancer is an expensive gift that keeps on giving.”