Cold caps help breast cancer patients avoid trauma of hair loss

Jill Lefferman, with her family, used cold caps during her breast cancer treatment.

Story highlights

  • Cold caps can help women with breast cancer keep their hair during chemotherapy
  • New research also shows success with automated scalp cooling devices that are less labor-intensive
  • Experts warn that their success is dependent on the individual patient and the chemo type

(CNN)When Jill Lefferman received a breast cancer diagnosis six years ago at age 39, her biggest concern was maintaining a normal life with her husband for the sake of their three young children. Part of that included an effort to retain her hair, even though the chemotherapy drugs required to battle her cancer would most certainly cause hair loss, according to her doctor.

"I lost my mother-in-law to cancer and was very aware of how our last memories of her were her not looking like herself and not the way she'd want to be remembered," Lefferman said. "It was terrifying to me that my kids would possibly have this frightening image of me be the last one if I didn't survive, and I was just determined that they wouldn't have that experience. I did everything I could in every way to normalize life for them and make it as untraumatic as possible."
At the time, Lefferman's doctor had just returned from an annual breast cancer meeting where there was a presentation on cold caps. She told Lefferman that it might be an option to help her maintain her natural hair, although she didn't know anyone who had tried it. Lefferman had looked into wigs and even purchased one, but she wanted to keep her own hair if possible.
    Breast cancer patients can wear cold caps before, during and after chemotherapy treatments to combat hair loss. The low temperatures cool the scalp, constricting blood vessels and preventing the chemotherapy from being delivered to hair follicles. This also decreases enzyme activity in the area, so even if some of the chemo is delivered, it will be inhibited.
    The gel-filled caps are stored in dry ice and kept at 32 degrees below zero. They must be kept at a certain temperature to be effective, so a family member, friend or technician has to change the cap every 30 minutes.
    One downside: Patients have an increased risk of developing cancer in the scalp later. But Lefferman's doctor did not believe the risk outweighed the benefit for her.
    With the help of her mother, Lefferman pursued using cold caps during her six months of chemotherapy. Living in Los Angeles with no knowledge of anyone else who had tried it, they ordered all of the equipment from a company based in England called Penguin, one of the main manufacturers of cold caps. Manual cold caps are not FDA-approved, so patients have to purchase and provide their own equipment. They can cost thousands of dollars and aren't covered by insurance.
    Lefferman also hired an experienced technician to help apply the caps and change them. If the caps aren't applied perfectly, hair loss and bald patches can occur.
    Some days, Lefferman would wear the caps for up to 10 hours before, during and after chemotherapy. She remembers her entire body being cold, so she would bundle up in boots and blankets. The weight also made it difficult for her to hold her head up, she said. And it was very painful, so she took Benadryl.
    There were more requirements for caring for her hair outside of treatment: showering in room-temperature water; not washing directly under a stream of water; not lathering up her hair; using gentle shampoos; using a comb in place of a brush; not using clips, hats or other hair restraints; sleeping on a silk pillowcase; and not getting it cut or colored.
    But it worked, and although she experienced some hair thinning, Lefferman was able to maintain most of her hair. Most important to her, she still looked like herself during treatment, which allowed her to experience "periods of normalcy in an abnormal experience."
    Now, Lefferman is a breast cancer survivor and peer supporter for Sharsheret, a national nonprofit organization that helps Jewish women and families facing breast and ovarian cancer. She is regularly in touch with recently diagnosed patients and shares her personal experience.
    For women who ask about cold capping, she's honest about just how big of an undertaking it is, so they know what they might be getting into. It's a difficult and personal choice for each woman, Lefferman said.
    "Just because you have to lose your breasts and maybe your reproductive organs, it's all the more reason that you might want to hold onto your hair," she said.

    A new option

    Hair loss due to chemotherapy is one of the more distressing parts of breast cancer for some women.
    "I thought that was one of the more traumatic parts of the whole cancer journey," said Emily Ferguson, 40, a breast cancer survivor from Atlanta. She lost her hair during her first bout with breast cancer in 2010.
    When she was diagnosed again in April 2015, she was determined not to lose her hair a second time. She had tried wigs the first time around but found them uncomfortable and impractical because of her active lifestyle that involves running and swimming. And most of all, she didn't feel like herself.
    "Being bald and wearing a wig, it makes you look sicker and feel worse than you actually are," she said.
    Ferguson, whois currently undergoing treatment, is wearing cold caps for the duration of her chemo. Her family and a close circle of friends are always on hand to help pack the caps on dry ice and change her caps during treatment.
    Emily Ferguson wears a cold cap during one of her treatments, surrounded by the friends who help her through it.
    But not every cancer patient is fortunate enough to be surrounded by such a strong support network.
    To ease the labor-intensive nature of cold caps, some companies have created automated scalp-cooling devices. They involve tight-fitting silicone caps that are connected by tubing to a small refrigeration unit that circulates coolant through tubing in the cap. The devices can also monitor and adjust the temperature as necessary, which is maintained at around 32 degrees. This eliminated the need to change the caps throughout the process.
    DiginiCap, which was cleared by the FDA in 2015, makes one such scalp cooling system. Another one, the Orbis Paxman Hair Loss Prevention System, is under review by the FDA. Studies comparing the effectiveness of these two systems were recently published in the medical journal JAMA.
    In the Paxman study, 51% of the women retained their hair and experienced less than 50% hair loss. In the DigniCap study, hair loss of 50% or less was also viewed as a successful outcome of scalp cooling, and that was achieved in 67 of 101 patients. Both studies compared the women using the respective devices to woman who did not use a scalp cooling device. All of the women who did not use scalp cooling lost their hair, while about half of the women using scalp cooling devices maintained an adequate amount.
    Both studies were partially funded by the manufacturers of the devices.
    The patient on the left used scalp cooling for hair retention. The patient on the right was part of the control group that did not use scalp cooling.
    The studies were conducted at multiple locations in the US, and the results varied, which the researchers said was due to errors in fitting the caps. Although they don't have to be changed out regularly, ensuring a good fit initial