“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.”
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 hair 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 two-time 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, who just finished treatment, wore cold caps for the duration of her chemo. Her family and a close circle of friends were always on hand to help pack the caps on dry ice and change her caps during treatment.
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 approved 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.
Both studies were partially funded by the manufacturers of the devices.
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 initially contributes to the success of the device, the researchers said.
“I don’t think we realized what a learning curve there would be in terms of learning how to fit the device really well and apply pressure points,” said Dr. Julie Nangia, an oncologist at the Baylor College of Medicine and one of the lead study authors.
The side effects for some patients were expected and included scalp pain, chills, dizziness, headaches and nausea. Researchers will follow up with the patients for five years to ensure that the treatment was effective and that none of them experiences a recurrence of cancer in the scalp.
Because scalp cooling devices aren’t covered by insurance, the researchers were hoping to show the psychological effects for women experiencing hair loss through quality of life data. In the Paxman study, there was no difference in quality of life for those who used scalp cooling devices versus those who did not. In the DigniCap study, those who used the scalp cooling devices felt less upset about losing their hair and experienced less of a negative effect regarding feelings about their physical attractiveness and femininity.
Going forward, Nangia wants to do more research with patients who have stage III breast cancer and develop specific quality of life tools regarding hair loss for women with breast cancer. She hopes more patients will have feasible access to scalp cooling devices at centers across the country. Like the cooling caps, the devices can cost between $1,500 and $3,000.
“There are several foundations that will provide financial assistance for patients,” said Dr. Mario Lacouture, director for the Oncodermatology Program at Memorial Sloan Kettering Cancer Center in New York. “I hope that as more people use these and they become standard of care, the prices will go down, and insurance carriers will cover some or all of the cost.”
Sloan Kettering was one of the centers that participated in the trials.
Proceeding with caution
Although cooling the scalp is not a new idea, the technology is, even if it is still time-consuming. It is limited to breast cancer patients, who have to wear the cap 30 minutes before chemo, during the entire chemo treatment and for 90 to 120 minutes afterward. And the danger of cancer returning in the scalp is real. Only time will tell for the women who participated in the study, he said.
But the key point Lichtenfeld made involved the different types of chemotherapy.
“There are several different types of chemotherapy regimens that are used to treat breast cancer, including drugs called taxanes (which cause hair loss) and anthracyclines (drugs which are notorious for causing rapid and virtually complete hair loss),” he wrote. “And guess what: in one of the studies — the one with the higher success rate — none of the women received anthracyclines.
“That’s important because it relates to how we set expectations for women in this situation. It means that if an anthracycline-type of drug is used, the results may not be what a woman could expect based on these studies, and how they’re reported. Treatment for breast cancer is difficult enough. Having hopes dashed just adds to the difficulty.”
He urged health care providers to properly educate their patients about the reality of this option, including the fact that in about half the women the results probably won’t be as good as anticipated.