Diagnosed with breast cancer in 2016, Christie Mangir accepted that she needed a double mastectomy and chemotherapy to save her life.
Her doctor told her that the side effects of her specific chemotherapy regimen came with temporary hair loss for most people, but there was a small chance she could experience permanent hair thinning or loss.
“I was already losing my breasts and going through cancer treatment at age 30 — the ability to save my hair gave me a sense of normalcy and control during a traumatic time,” she said.
A chance encounter at a local store introduced her to “scalp cooling,” which prevents hair loss by freezing the scalp so that chemotherapy can’t affect the follicles.
The treatment has been around awhile, but it only recently has become more accessible and gained legitimacy among federal regulators and the medical community.
For some cancer patients, hair loss is the second-most devastating moment following diagnosis and a tell-tale sign they are battling disease, said Dr. Marleen Meyers, a medical oncologist and director of the survivorship program at NYU Langone Laura and Isaac Perlmutter Cancer Center.
Making the choice to preserve hair helps patients exercise control in an uncontrollable situation, she said.
“I can truly say that in people who use it and works very well, it’s emotionally a much better experience,” Dr. Meyers said.
To use scalp cooling, patients wear a large cap that is cooled to a temperature well below freezing and constricts blood vessels in the scalp. This prevents chemotherapy from reaching and destroying hair follicles.
Studies have shown that most patients using a cold cap only lose about 50 percent or less of their hair.
Oncologists at first were hesitant to suggest the treatment, uncertain about its safety and efficacy. There’s a concern that blocking chemotherapy in the scalp tissue may leave cancer cells behind, although research has shown this as a negligible outcome.
“For a long time the technology was there, but it was rudimentary. Very few people did it because it was cumbersome and oncologists didn’t recommend it,” Dr. Meyers said.
There are two types of scalp-cooling procedures. One involves portable cold-caps that require patients to change gel-filled “ice-packs” every 30 minutes for the length of the chemotherapy infusion and often for an hour afterward.
The other uses a machine that circulates coolant through tubes in the cap. Patients put on the cap about one hour before chemotherapy infusion and leave it on for one hour afterward.
One device, Dignicap, was cleared by the Food and Drug Administration in 2015 for patients undergoing treatment for breast cancer and later expanded to all solid tumor cancers, which originate in tissue such as ovaries, colon and prostate, among others.
Another technology, *Paxman, was cleared in 2017 for use in breast cancer patients.
Scalp-cooling costs are not covered by health insurance.
Ms. Mangir estimates she spent about $3,000 for hers. That included renting the portable cold caps, buying hundreds of pounds of dry ice and coolers to store them, infrared thermometers to monitor temperature and special gloves to handle the caps.
Her father and her husband also had to take off work to switch the caps off her head every 30 minutes as they warmed.
“It was an interesting and somewhat difficult process, but it meant that I saved the majority of my hair throughout chemo,” Ms. Mangir said.Not every cancer center can accommodate cold capping, and only a few in the District of Columbia, Maryland and Virginia have machines that are user friendly for patients.
An increased burden is placed on treatment center staff, who have to schedule patients using cold-caps for more time in chemotherapy chairs at the expense of other patients.
But recognizing the positive emotional impact on patients, more hospitals are looking to add the technology in their treatment centers.
“I’ve had patients refuse chemotherapy because of hair loss,” said Dr. Rebecca Kaltman, a medical oncologist who focuses on breast cancer at George Washington University Hospital in the District.
Within the past year, the hospital has installed two DigniCap machines in their outpatient chemotherapy center, she said.
“I will say that we’re trying to expand the amount of use as the need expands so we are open to having more devices if the demand is there,” Dr. Kaltman said.
Following her own experience, Ms. Mangir teamed up with fellow breast cancer survivor Liz Lord to establish Cold Capital Fund, a D.C.-based nonprofit to help patients afford scalp-cooling and advocate for the technology in more hospitals in the D.C. area.
Other financial assistance can be found in HairToStay, a national nonprofit that helps patients afford scalp-cooling.
The hope is that this treatment eventually will be covered by insurance, a process that Dignitana, the company that makes DigniCap, is undertaking.
“Most insurance companies will cover wigs. Why shouldn’t this be covered?” Dr. Meyers said. “Lets face it. This is a toxicity of chemotherapy, and it’s a devastating toxicity.”
* (Correction: An earlier version of this article incorrectly said Paxman was cleared by the FDA for use in all solid tumor cancers. It is only cleared for use in treatments related to breast cancer.)