Oct. 28, 2010 -- When Shirley Billigmeier was diagnosed with breast cancer this spring, she was grateful for a good prognosis and set about preparing for the life disruption that comes with undergoing a lumpectomy, radiation and chemotherapy.
"I just had a feeling that I was just going to be sick this whole time," said Billigmeier. "And my concern was that it was just gonna absolutely take me out of my life for a while."
When her doctor told her that total hair loss was an inevitable side effect of the chemotherapy, she braced herself and bought a wig, but then a friend told her about another breast cancer patient who managed to preserve her hair using a little-known approach that involves keeping the scalp very cold during chemotherapy treatments.
Billigmeier tracked down the makers of Penguin Cold Caps, designed to help chemotherapy patients keep their hair.
"[He] gives me a list of probably 10 women," said Billigmeier. "I start calling and start having some great conversations with lots of women across the United States. And the women I was talking to, they kept their hair."
Her Minneapolis oncologist, Dr. Paul Zander, was skeptical at first. He knew that early experiments in the United States in the 1980s hadn't been very promising. Still, he gave her the OK to try it. So on each day she received chemotherapy, Billigmeier put on a freshly chilled cap chilled to -22 degrees Fahrenheit every 30 minutes for seven long hours.
Billigmeier's dream team of helpers said the undertaking ended up being a welcome distraction and a bonding experience.
"It seems silly to say that chemo was this happy day," Billigmeier's friend Nancy Marshall said. "But it was this enormously positive, upbeat thing where we all knew we were helping a dear friend. We also knew we were doing something that was potentially going to help a lot of other people. So, you know, there was a lot more riding on it than just Shirley's great hair."
But would it work? After her sixth and final treatment, Billigmeier's locks were intact.
"My hair is all there," she said. "It definitely works."
No one knows how it works. One theory is that the caps may work by decreasing blood flow to the scalp, causing the blood vessels in the scalp to shrink. This, in turn, blocks the harsh chemicals in the chemotherapy from reaching the hair follicles. But the fact is no one knows exactly why some women keep their hair after using the caps.
Some doctors are worried by the lack of data on cold caps, and they fear the treatment may even do more harm than good, for some patients. Still, cold caps are experiencing a groundswell of support from a growing number of women receiving chemotherapy who say it works -- and spread the news.
Experts Warn About Serious Potential Risks
While early trials with scalp cooling showed it often was ineffective, an analysis of 53 studies showed that since 1995 research suggests the scalp cooling preserves hair in about 70 percent of patients.
But a number of doctors told ABC News they don't support the approach because of another concern.
"I don't know how well this was substantiated, but there has been concern that by blocking chemotherapy from reaching the area of the hair follicles there would be an increase in metastases of the scalp," said Dr. Mary Daly, an oncologist at the Fox Chase Cancer Center in Philadelphia.
Since there are no substantial longitudinal studies measuring such a risk, many doctors strongly discourage using the caps.
Barrie Cassileth of Memorial Sloan-Kettering Cancer Center in New York said there are two reasons she doesn't recommend the use of cold caps.
"They rarely work, if ever, for the intended purpose, and they may prevent chemo from reaching cancer cells in the head area," she said.
And Dr. Stefan Gluck, professor of medicine at the University of Miami School of Medicine, said that "[a]lthough there is a meta-analysis showing that it may be [marginally] beneficial we do not recommend it."
But despite the concerns of the medical community, cold cap therapy has generated a tremendous amount of interest among many women. The discussion boards on BreastCancer.org, a non-profit organization dedicated to giving women the latest information about breast cancer, has more than 1,500 posts related to cold cap therapy. There are dozens of pages of comments from women who are in favor of using the caps.
"[My sister's] oncologist said they don't work," wrote one woman. "[W]hat a difference a year makes because I've met with 2 oncologists at two different places and both sort of [gave] in that they do work."
"It is very promising and I hope more women would find out about this. It makes chemo not as bad if you can look yourself and feel good while you go [through] it," wrote another woman.
Dr. Anne Moore, director of the Weill Cornell Breast Center in New York, said some of her patients have made a major push for the treatment.
"So when our patients came to us -- it's certainly patient-initiated -- we perked up our ears and listened to them and see no reason not to support it," said Moore.
Moore plans to undertake a study using Penguin Cool Caps.
Once skeptical, Zander now embraces the caps for some patients even though he acknowledges the need for more research.
"I think that's well balanced by the people who preserve their hair and get therapy they needed rather than decline therapy and have a clear increased risk," Zander said.
New studies are planned at the University of California, San Francisco and New York-Presbyterian Weill Cornell Medical Center.
In the meantime, now cancer-free, Billigmeier has started a non-profit organization called The Rapunzel Project to raise awareness about scalp cooling and encourage additional research.
Treatment Centers Supporting Cold Cap Therapy
The following medical centers have special freezers to accommodate the caps:
Beaumont Hospital, Royal Oak, Mich.
Minnesota Oncology, Minneapolis office
Minnesota Oncology, St. Paul office
University of California, San Francisco Medical Center, San Francisco
New York-Presbyterian Hospital/Weill Cornell Medical College, New York
Fairview Southdale Oncology Center, Edina, Minn. (coming soon)
Washington Oncology Hematology Center, Washington (coming soon)