The Lisa Wexler Show

A simple cap may help thousands of breast cancer patients keep their hair during chemotherapy. While doctors remain skeptical, grassroots groups of women are banding together to get the word out about cold cap therapy -- and the empowering effect it can have.

“Nobody wants to be a victim, and everyone reacts to that hair loss,” Shirley Billigmeier, co-founder of cold cap advocacy organization The Rapunzel Project and a breast cancer survivor, told AOL Health.

The controversial cold caps, which are simple caps cooled to below 30 degrees centigrade, can be worn during chemotherapy to halt hair loss. Scientists hypothesize that they freeze the hair follicle, essentially sending it into hibernation. Preliminary studies have shown that the caps help between 70 and 90 percent of users save their hair. Though the caps have been available for years and have been widely used in Europe, few medical professionals in the U.S. have yet supported them.

Billigmeier, who lives outside of Minneapolis, only learned about cold caps due to a chance conversation with her dermatologist. Billigmeier had been diagnosed with breast cancer at 59, in July 2009, and mentioned that she planned to buy a wig. Her dermatologist suggested that she speak with a local woman who was one of the first three people in the U.S. to keep her hair with a cold cap.

"I absolutely had to understand this better," says Billigmeier.

She dove into research, speaking with Frank Fronda, the inventor of Penguin Cold Caps. "Some of my friends thought, 'Oh my word, she's gone whacky, just humor her,'" she says.

Doctors, too, are often skeptical about the caps, which are precisely cooled and applied to the scalp before, during and after chemotherapy. Experiments with early versions of the caps in the 1980s found them to be ineffective. Many doctors strongly discourage use of the caps, worried that by blocking the hair follicle, the caps may block chemotherapy from busting cancer in the roots. They are not recommended for people with certain cancers -- especially blood-borne cancers that may circulate to the scalp. But breast cancer chemotherapy is usually administered after a mastectomy or lumpectomy as a preventative measure.

After speaking with women across the country that had used the caps, Billigmeier became convinced that a cap could make an enormous difference in her treatment.

"My husband said my energy went back to normal once I got a hold of the cap," she says.

The caps worked for Billigmeier, who paid $30 per cap per treatment -- a total of $1500 that she says was well worth it. She kept her long, thick hair throughout her three months of chemotherapy. She also believes that her positive experience helped her recover more quickly.

"When you feel better, you heal better," she says.

Billigmeier’s oncologist supported her choice but initially expressed concern that she would be disappointed if she lost her hair. After seeing her success, he has become a proponent of the caps, while noting that more research is needed.

In order to support such research, Billigmeier and her friend Nancy Marshall founded the non-profit Rapunzel Project. They aim to lobby for better clinical trials and more sustained studies. They also want to make cold caps easier to use, and have helped to donate biomedical freezers -- which enable medical staff to precisely cool each cap so that patients are not forced to use dry ice -- to hospitals in Minnesota and New York. They are currently planning to donate freezers to a Washington D.C. hospital and another hospital in Minnesota.

Billigmeier simply wants more women to have the option to use a cold cap.

"When I felt I could keep my hair, I felt empowered," says Billigmeier. "I reclaimed choice and identity, and it gave me strength."


By Justine van der Leun 10/29/10