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Why Some Chemo Patients Choose Expensive Cold Cap Therapy

Life stopped when 28-year-old Kelsey McLaughlin found out she had stage-three breast cancer. “It felt like someone cruelly reached down out of the sky and pressed a pause button in the timeline of my life,” she tells SELF. “I’m a planner through and through, so to feel like my ability to plan was limited was nothing short of devastating.”

Up until her diagnosis, McLaughlin had been perfectly healthy. So when she felt an almond-sized lump in her right breast, the odds that it was just a cyst appeared to be in her favor. But it wasn’t a cyst. “I worked so hard to be healthy–shouldn’t that count for something? I have a gym membership, practice yoga several times per week, I drink kale smoothies (almost) every day, and I sure as heck do not get cancer,” she wrote on her blog a few weeks after her diagnosis.

Determined not to let her cancer poison her life more than it absolutely had to, McLaughlin began to look for small ways to regain control.

After working with her care team to develop a treatment plan, she took to the internet to learn about how other women her age navigated cancer. “I became obsessed with finding other women my age with my diagnosis. I wanted to know everything about their experience with chemotherapy so I knew what to expect,” she says.

With the reality of chemotherapy—the cancer had spread to her lymph nodes—came the likelihood of losing her hair, which felt like another stab at her identity. “I wasn’t ready for any of this, but I especially wasn’t ready to look like a cancer patient,” McLaughlin says.

Scrolling through a hashtag rabbit hole on Instagram, she happened upon the trademark blue caps of cold cap therapy, a scalp cooling system that purportedly keeps chemotherapy medicine from reaching hair follicles by constricting blood vessels in the scalp, allowing patients to keep some of their hair during treatment.

DigniCap and Paxman, the only two FDA-cleared cooling caps in the U.S., reportedly work by cooling the scalp enough that the blood vessels constrict, limiting the amount of blood-flow (and thus, medicine) that gets to the scalp area and hair follicles. Both systems work best for patients receiving taxane-based chemotherapy and anthracyclines agents, and are not recommended for patients with lymphomas, leukemia, malignancies of the scalp, or patients who will receive radiation in the head or scalp area.

McLaughlin immediately contacted her nurse navigator, who confirmed that cold cap therapy was available at the hospital where she would receive treatment.

Despite the considerable price tag—McLaughlin and her husband are dishing out thousands for the process, which isn’t yet covered by all insurance plans in spite of its FDA clearance—they were on board.

McLaughlin’s therapy costs $500 per month, plus a one-time deposit at the time of rental (she rents the equipment and her husband helps her put the caps on). This cost can increase significantly if the hospital has their own equipment and requires a nurse to apply the caps, rather than a patient’s family member or caregiver.

“It feels like having a brain freeze on your scalp times a thousand.”

The most common side effects of cold capping are headaches, neck and shoulder discomfort, chills, and scalp pain, according to the American Cancer Society.

“I have a love/hate relationship with cold capping,” explains McLaughlin. “On the one hand, it would be so much easier to do chemotherapy without cold capping. It is freezing cold, and it hurts. It feels like having a brain freeze on your scalp times a thousand. Imagine putting on a tight fitting cap (much like the feel of an ice pack) that’s been in a bio-freezer forever. Also, I get very sleepy during chemo due to some of the medications they have to give me along with the treatment, and I wish I could just lie back and take a long nap and wake up when it’s all over. But cold capping doesn’t let me do any of that.”

Still, she says her investment has paid off. Eight sessions into her chemotherapy treatment, McLaughlin estimates she still has 50 to 60 percent of her hair, which, according to research, is right on track.

According to The American Cancer Society, recent studies of women receiving chemo for early-stage breast cancer have found that at least half of women using newer cold-cap systems have kept at least half of their hair.

Though her hair isn’t the same—it’s considerably thinner and, because the follicles are so fragile, she can’t use heat or other hair products on it—being able to regulate just one aspect of her chemotherapy treatment has transformed her treatment process. “Sometimes, I honestly forget about the disease within me because I have my hair. It hasn’t been easy, but it has been worth it so far. It gives me so much hope in what feels like a hopeless and very traumatic time in my life,” she says.

Like McLaughlin, Crystal Brown-Tatum, a 10-year breast cancer survivor, tells SELF that she was traumatized by the potential of hair loss, so much so that she delayed chemo for two months after her lumpectomy, which she knew wasn’t ideal by medical standards. “I just couldn’t imagine myself bald. I have always had long hair, which is highly treasured in the black community. I have never worn my hair short, so the thought of being bald was paralyzing for me,” she says.

Because cold caps weren’t an option for her in 2007, to take control over her process, Brown-Tatum preemptively shaved her head before chemo treatment. Though she felt empowered by her own decision, which she says helped her better manage the treatment effects, she knows the option to keep some of her hair would have made a big difference.

“A cap to preserve the hair definitely would have impacted my treatment because I ended up dropping out from the last two out of depression and mental exhaustion,” she says. “I think I would have felt more like myself had I retained my hair.”

Nancy Marshall, co-founder of the Rapunzel Project, a Minneapolis nonprofit that builds awareness of cold-cap therapy, tells SELF that feeling like yourself can mean everything during cancer treatment.

“You’re in this powerless time, and making the choice to save your hair is something you can control,” she says. “It also helps maintain a sense of identity; when you look in the mirror, you don’t see a stranger.”

Herself a breast cancer survivor, Marshall is a first-hand witness to the effectiveness of cold-capping. Though she was able to bypass chemotherapy due to a mastectomy, she walked through the process with her close friend and Rapunzel co-founder Shirley, who kept 90 percent of her hair through cold capping. The pair, along with the entire treatment team, were amazed by the results. “No one really believed this could work. But when Shirley walked in for her third chemo, she had a full head of hair. The nurses had tears in their eyes and burst into applause,” she says.

According to a 2017 clinical trial of 182 breast cancer patients undergoing chemotherapy, cold capping can be an effective tool in alleviating the trauma of hair loss. “Chemotherapy-induced alopecia is an important problem to patients with cancer, ranking among the most distressing adverse effects,” the study’s authors write. “Women have reported decreases in self-esteem, sexuality, and body image related to chemotherapy-induced alopecia; some women have even described having chemotherapy-induced alopecia as being more difficult than losing a breast…The use of scalp cooling devices may help to alleviate some of this distress.”

For McLaughlin, maintaining a sense of normalcy in the midst of an otherwise cruel interruption was a profound way to protect her self-esteem and body image.

But keeping her hair has nothing to do with vanity and everything to do with remembering who she really is, separate from the disease ravaging her body.

“Though my hair is far from stylish or cute, keeping enough to avoid looking sick has been a complete breast cancer game changer. I feel like I got to actually choose something in a process that was none of my choosing,” she says.

Still, McLaughlin says she recognizes the opportunity she has to manage her treatment this way is rare. “There’s a certain privilege I’ve felt in choosing this process to keep my hair, and I wish it was more affordable so other women would be able to go through the trauma that is cancer with the same sense of dignity I have been afforded,” she says. “I know I’m lucky, and I don’t take it lightly that I am able to do what so many cannot.”

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