Intercepting, translating, consoling, advocating, and smoothing the rocky road for breast cancer patients, nurse navigators are the linchpins for cancer patients from diagnosis through treatment. These are some of the nurse navigators whom patients encounter on their journey:
* * *Maybe she was the person sitting discretely in a corner during the radiologist’s consult as he delivered the breast cancer diagnosis. At the meeting’s end, she handed off a thick, black, zippered binder with the caveat that most of the patient’s questions would be answered within the pages. “Call me when you can,” she gently urged the patient, knowing that a stack of paper could not begin to address the patient’s queries, much less tackle the emotional turmoil.
* * *She was most definitely the nurse navigator who rushed out of the oncology surgeon’s office and raced down the hallway after the patient who fled the session when the surgeon shrugged an “it’s-up-to-you” attitude when asked for an opinion regarding the treatment options the patient faced. Although it’s not the surgeon’s responsibility to deal with a patient’s treatment plan, the patient was devastated by his expressionless nonchalant response. But the nurse navigator interpreted the patient’s feeling of abandonment. “You are doing the right thing,” she whispered into the patient’s ear, as an unexpected lifeline of support, not really knowing if the patient’s decision to switch oncology treatment to a different facility was the right move. But at that point, any whiff of support was comforting.
* * *With a matter-of-fact resolve, the nurse navigator instilled a level of confidence—and hope—as she led the soon-to-be chemotherapy patient on a tour of the oncology infusion facility with the patient and her daughter linking arms, gripping each other’s hands and unable to stop the tears rolling down their cheeks.
* * *
These are among the many takeaway images of nurse navigators that are seared into a breast cancer patient’s memory as she confronts the reality of the medical journey ahead.
Nurse navigators are playing yet another critical role in the ordeal cancer patients go through. With the advent of scalp cooling technology recently approved by the FDA, some breast cancer patients have an opportunity to counteract the most dreaded chemotherapy side effect—hair loss.
And nurse navigators, whether patients know them by their titles or not, are critical to implementing scalp cooling systems for patients undergoing chemotherapy, enabling them to tolerate the roller coaster ride.
Scalp Cooling Systems
The concept of scalp cooling caps is not new at cancer care facilities. Many clinical oncology nurses are familiar with manual cooling caps manipulated by patients assisted by a friend or family member. But with the advent of the automated cool cap system using technology, clinical nurses—and nurse navigators—are being recruited into an active role.
Recent studies have confirmed that women with early-stage breast cancer who underwent scalp cooling treatments were significantly more likely to keep at least some of their hair throughout chemotherapy. The FDA has approved the systems for use in breast cancer patients, and, more recently, approved expanded use for patients with other solid tumors. The 2 automated cooling systems on which the research focused were DigniCap, made in Sweden, and Paxman Scalp Cooling System, created in England.
With its approval, the FDA essentially dispelled many oncologists’ concerns that scalp cooling could disrupt the chemo treatment effects.
At East Jefferson General Hospital (EJGH) in Metairie, LA, a community neighboring New Orleans, DigniCap was introduced in July. EJGH is 1 of 2 facilities in the greater New Orleans area offering patients the scalp cooling system. The region has 7 cancer care facilities.
“The nurse navigator’s central leadership makes her a natural to help both hospital staff and patients understand the cool cap concept,” says Josie Divers, RN, BSN, Clinical Oncology Services for DigniCap. “Nurse navigators have an expanded role giving concentrated integral care coordination.”
If a facility is fortunate enough to have a scalp cooling system, Josie says, the nurse navigator has a major part in the process with overseeing coordination and disseminating information to hospital administrators, doctors, patients, schedulers, and clinical nursing staff, among others.
“I find a better experience with a dedicated nurse navigator as a go-to person who can take time to get the kinks out,” Josie says. “When facilities take on the scalp cooling process, it’s easier brought about by a nurse navigator as a point person who is literally navigating a patient through her care.”
EJGH nurse navigators Debbie Schmitz, BA, BSN, RN, and Anna Heim, ASN, RN, can attest to how the scalp cooling system has added to their roles as caregivers.
“We’re all in a learning mode,” Anna says. “Initially, it was scary in the sense that it was a new system being integrated potentially into the treatment regimen.” Understandably, nurses at first were skeptical of the hands-on commitment and additional time requirement the automated system would demand.
But as nurse navigators, “it’s good to sharpen our skills and learn something new,” Debbie says.
“Navigators are a resource to support the infusion center staff. It’s a team mentality,” Anna agrees. “We need to be open to it, because our driving force is patient care. If this is going to help the patient, we are all in.”
If patients have this option, Debbie continues, “it’s up to us along with the nurses in the infusion center to integrate it into the treatment process. It’s not my patient or your patient. It’s our patient.”
For some, hair can define a person, just as age does, Anna says. “But if by saving their hair, patients can stay in the game, we have to do what we can to help. If we can subtract 1 source of stress, we believe it’s worth it.”
Although the cool caps are not always successful in a patient’s effort to keep her hair, “you have to be open to the technology. If it does not help, patients can at least be comforted that they tried,” Debbie says. “They won’t have to play the ‘woulda-coulda-shoulda’ game.”
Apprising patients of the opportunity to keep their hair, nurse navigators have another step at every phase of the treatment plan. But not all cancer patients immediately accept keeping their hair as a means of preserving their identity. Scalp cooling seemed far less important to Stephanie Wells, 51, when she was diagnosed with breast cancer 1 year ago. Even though her oncologist mentioned the cooling system as an option for her, she says, “The chemotherapy treatment itself seemed much more daunting than just losing my hair. Dealing with my hair seemed frivolous, and I didn’t think that was what I should be focusing on. I should be focused on staying alive. I can go bald and handle that.”
But as she reflected on the months of chemo treatment ahead, she realized that she did care about how people would react to her appearance. A college literature professor in the San Francisco Bay Area, she imagined students would be distracted by her baldness. As traumatic as the cancer and the chemotherapy would be, she reasoned, “Why does it have to be hair loss too?”
Eventually, she did an about-face and opted for the scalp cooling system. “Not everyone has to know that I’m going through this ordeal,” she realized. Being able to keep 85% of her hair with the cooling system, she says, “was a gift that I could be private about it if I wanted to. It doesn’t have to be the only thing that people think about when they see me.”
Nurse navigators who have yet to be introduced to the concept of scalp cooling will no doubt run into breast cancer patients like Adrianne Frost, 43, who was fiercely determined to take matters into her own hands to keep as much of her hair as possible.
It wasn’t the ominous “you have breast cancer” diagnosis 2 years ago that took her breath away. It was the near certainty that the required chemotherapy might save her life and leave her bald. “The diagnosis didn’t faze me as much as the certainty of losing my hair with the chemotherapy treatment,” recalls the San Antonio, TX–based real estate agent.
Adrianne had heard reports that a scalp cooling system had been approved by the FDA. But other than the few centers where clinical trials had been performed—predominantly on the East Coast and West Coast—no cancer care facilities had acquired a system.
Adrianne didn’t let the logistical hurdles dampen her resolve. She connected the cooling system’s Swedish manufacturer with the cancer center officials, arranged contracts, and commandeered shipment and installation of the system in time for her first chemotherapy. She distilled what would typically be a 6-month ordeal into an intense 6-week campaign.
“I made it my mission. It was actually very therapeutic,” she recalls of the reams of paperwork and negotiations she spearheaded on the way to getting the system into the San Antonio facility. “It took my mind off what I was going through.”
Adrianne was the first breast cancer patient in the United States to use the system outside of a clinical trial.
As nurse navigators become more aware of how the scalp cooling system works and how important it is to patients hoping to retain their hair through the chemotherapy, they become instrumental in smoothing the difficulties of the side effects of the chemotherapy. That was the experience for breast cancer patient Monika Dockendorf, 30, a paralegal in Annapolis, MD, who spent 1 month shopping among 3 breast surgeons, 2 reconstruction surgeons, and 2 oncologists.
When she finally decided on a treatment plan, she says the nurse navigator offered “amazing” support during the scalp cooling process. “She was very knowledgeable on the subject. A few times my husband and I would reach out to her with questions, and she would always respond with answers or find the answer even if she didn’t know it,” Monika says.
Retaining the majority of her hair through the scalp cooling system was the one comforting element during Monika’s treatment. “It’s almost like my identity would be stripped away,” she says. “When battling for your life, it’s not only the disease, but you have to look different, too. For me being able to walk my dog and not have people realize I was undergoing chemotherapy was a huge part of maintaining some semblance of control.”
However, the cost of the remedy that would address the loss of her hair is often beyond a patient’s financial reach. The cost of the caps varies depending on the manufacturer and the number of chemotherapy sessions the patient will have over weeks or months.
To the rescue of some 500 cancer patients to date, the nonprofit organization HairToStay has offset patients’ costs of the cooling systems with subsidies up to $1000.
The cost of a cooling system is typically $350 per infusion session, or between $1500 and $3500 per patient, and is not covered by most insurance plans. About 50 medical centers across 17 states currently have the DigniCap.
Founded in 2016, HairToStay has grown because patients’ requests for support have increased from 12 per month to 20 per week—a rate that is not sustainable for the organization to address without additional funding sources, says founder and CEO Bethany Hornthal.
“The evolution of patients’ burden and their inability to pay has created a sense of urgency on our part,” Bethany says, adding that the organization is now aggressively soliciting help from such sources as hair salons and hair care manufacturers, as well as launching a national fundraising initiative, Salon-a-Thon, in October.
Another nonprofit support resource is The Rapunzel Project dedicated to helping women and men undergoing chemotherapy access and use scalp cooling technology to help keep their hair. The project raises awareness about scalp cooling and encourages additional research.
In addition, there are individual breast cancer patients who step up to take the scalp cooling system to the next level. Gail Wall, a retransplanted New Orleanian, opted for treatment at New Orleans’ EJGH instead of the larger facilities in New York City, where the cooling systems were more integrated into cancer care. Buoyed by the enthusiasm of her nurse navigators, and after undergoing scalp cooling with the manual system during her chemotherapy, she decided to fund EJGH’s first DigniCap scalp cooling system. When she saw the interest of the nurse navigators, Gail was inspired to offer future breast cancer patients the option of a technologically advanced automated system.
Throughout her 6 chemo sessions spread across 18 weeks, Gail had a contingent of family members helping her with the manual cool caps—and lost about 40% of her hair. She is grateful for this level of support, but she is worried that other cancer patients might not be so lucky as to have family to assist them in the very hands-on and time-consuming manual process.
She gives the nurse navigators credit for their level of enthusiasm and interest in learning about scalp cooling systems, even the manual system she was using. Their reactions convinced her, in turn, to have a positive impact on other patient experiences and advance the facility’s cancer care treatment with an automated scalp cooling system.
“The loss of one’s hair is burdensome on top of everything you need to get through,” says Gail. “It was a pleasure to write the check. With my illness, I am extremely fortunate. As a working mom, I know and appreciate how hard it is to work, take care of yourself, your family, and everything else.”
She was brought up to give back to the community, she says. “At every possible opportunity, we need to step in where we can and give back, even if it’s just a small amount. This is a no-brainer.”
Today, the scalp cooling system is up and running at EJGH as an option for other breast cancer patients following in Gail’s steps—a path on which the nurse navigators are in attendance every step of the way. As the scalp cooling devices become an integral part of other cancer care facilities across the country, nurse navigators will continue to be a vital resource.
The Backstory and Future Story of Scalp Cooling Systems
Although the available scalp cooling systems use tight-fitting, strap-on helmet-style caps filled with a gel coolant that’s chilled to between –15°F and –40°F, manual cold caps and automatic scalp cooling operate differently. Manual cold caps are kept in a cooler filled with dry ice before they’re worn. They thaw out during a chemotherapy infusion session and need to be replaced with a new cap about every 20 minutes. Patients rent the caps and the cooler, and get the dry ice supplied by another source prior to infusion. Arctic Cold Caps, Penguin, Chemo Cold Caps, and Elasto-Gel are some cold cap brand names.
With automatically controlled scalp cooling systems, the cap is attached to a small refrigeration machine that circulates coolant, so the cap has to be fitted only once and doesn’t need to be changed during chemotherapy. Automated scalp cooling systems—DigniCap and Paxman are currently on the market—are typically purchased by the cancer treatment center, and patients are charged for use of the system while receiving chemotherapy.
Both the manual cold caps and the automated scalp cooling systems require patients to wear them preinfusion and postinfusion, adding considerable time to the process.
The cooling systems work by narrowing the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles, which reduces the likelihood of the hair falling out.
Patients, mostly women, have reported that they can tolerate the freezing cold caps and have minimal adverse effects. The cold of wearing the cap doesn’t seem to bother them once the caps are on for a few minutes.
Overall, more than half of the women with early-stage breast cancer who wore cooling caps kept at least half their hair, and about 5% kept all their hair. Hair retention varied depending on the types and duration of cancer drugs used. Although the scalp cooling system does not work for everyone, researchers noted that the technique is more effective for patients not receiving anthracycline therapy.
Two recent studies published in JAMA—one from the University of California, San Francisco (UCSF), and the other from Baylor College of Medicine in Houston, TX—confirmed that women with early-stage breast cancer who underwent scalp cooling treatments were significantly more likely to keep at least some of their hair throughout chemotherapy.
The UCSF study involved 122 women with stage I/II breast cancer. The women used the DigniCap, made by the Swedish company Dignitana, which partially funded the study. The device received clearance from the FDA in December 2015. Five percent of patients who wore the cap had no hair loss, and 36% lost 25% or less of their hair by the end of their adjuvant chemotherapy. The women who did not receive scalp cooling treatment lost most or all of their hair.
In the study from Baylor, 142 women with stage I/II breast cancer were evaluated. They were receiving a broader range of chemotherapy. The women in the scalp cooling group used a device created in England called the Paxman Scalp Cooling System, with similar results.
In the study, which was partially funded by Paxman, 50% of the women who had access to the scalp cooling device retained more than 50% of their hair, “so it was quite effective,” says Dr Julie Nangia, an assistant professor of medicine at Baylor and the study’s lead author.
“We have this huge growing population of breast cancer survivors, and many of them are very traumatized by their treatment,” says Dr Hope S. Rugo, the director of breast oncology and clinical trials education at the UCSF Helen Diller Family Comprehensive Cancer Center and lead investigator. “We’re working on all sorts of areas to try to limit that impact, and one is scalp cooling.”
Many within the medical community realize that not all patients will want scalp cooling treatment, but they would like every woman to have the option.
“There is a small percentage of women who will decline chemotherapy because they don’t want to lose their hair,” Dr Nangia says. They “are at a higher risk for relapse, and if the cancer comes back, we can’t cure it.” Having the option of scalp cooling could encourage them to pursue lifesaving treatment, she says.
Dr Rugo is optimistic that insurance companies will cover scalp cooling in the future. The recent research studies are a critical step in making that happen, she says.
Most breast cancer patients undergoing chemotherapy agree that seeing someone lose her hair makes others think she is sicker than she actually is. If women can keep their hair and look on the outside the same as before their breast cancer treatment, the psychological effect is monumental.
Even with patches of hair loss, patients still see advantages to the cooling system. Among the challenges, patients are burdened with the loss-of-control aspect of their illness. But if retaining hair is the one element under a patient’s control, it’s a big way to maintain some level of control.