Controlling My Story With Scalp Cooling

BY: Shea Mencel

I was diagnosed with Stage II, hormone receptor-positive breast cancer in June 2018.  I was 29 years old. Life as I knew it, as well as the life I had imagined for myself, drastically and permanently changed overnight.  “Cancer patient” became my new full-time job and followed with a year consumed with treatment and procedures including a double mastectomy, fertility preservation, chemotherapy, reconstruction, and radiation. 

One of my initial looming thoughts during my transition to cancer patient was: “Will I lose my hair?”. I assumed the answer was a resounding “yes.” To my amazement, I was wrong. Through a simple Google search, my mom discovered hair preservation during chemotherapy is possible through a method called scalp cooling.

This option was not presented, or even mentioned, by any of the doctors or nurses on my team. Most had never heard of it. When I inquired about scalp cooling, my oncologist discouraged me from moving forward with it, saying it was “too painful” and it “would not work.” He said the only patient he knew who had tried it was a model, so she must have really needed her hair. The insinuation that a woman going through cancer treatment who wants to keep her hair is doing so simply for vanity only gave me more encouragement to prove my doctor wrong.

Oncologists proactively fill scripts for nausea, mouth sores, and countless other chemotherapy side effects. I was astounded this particular side effect was met with hesitation, disbelief, and discouragement; particularly since for many it is as heartbreaking as permanently losing your breasts. Yet, when I pushed for it, I was passively accused of vanity and encouraged to focus on survival and not how I looked.  But, I had already lost my breasts. I was learning to love a new body that felt foreign to me.  I was preparing to possibly lose my fertility. I was grieving these losses while also learning how to surrender to the growing list of changes that were out of my control. Why would I not at least try to retain my sense of self at a time when there was very little?  

Scalp cooling, also commonly known as cold cap therapy, prevents hair loss during chemotherapy by cooling the hair follicles during infusions using cooled headpieces. I had four caps that were chilled to approximately 35 degrees below zero using dry ice. For each infusion I spent 10 hours wearing these cold caps. I started one hour prior to my infusion start time, wore a cap through my entire infusion and kept wearing them for four hours after my infusion concluded. During this time, I had to change the cap every 25 minutes for a colder one to keep my follicles at the correct freezing temperature. Imagine a full day of the worst brain freeze you’ve ever had without the satisfaction of the ice cream!

The process was a lot of work, particularly for my family, who helped me unfailingly during each infusion. When I arrived for treatment, I would snuggle into my chair, wrap myself in a heated blanket, and take a deep breathe. Once the hat was strapped firmly to my head, the bitter cold would engulf my whole body, but after ten minutes my scalp would numb, making the process more manageable. The heaviness of the cap was immediate. I wore a travel pillow around my neck to ease the weight, but the heaviness resulted in a chronically aching neck throughout treatment. Meanwhile, my family arrived ready for our chemotherapy tailgate pulling a large cooler of dry ice and snacks to keep us going.  While I met with my oncologist, my husband would tirelessly rotate my caps every twenty minutes on ice to get them ready for the day. I quickly, and proudly, became known as the “cold cap girl,” as I was the only patient using them in my treatment center.

Each family member had a vital role. My husband, who we appointed our “cold cap captain” monitored the temperature of the caps and kept them rotating in the dry ice, as well as guided the entire process. My mom and mother-in-law barely had time to sit down before they had to remove a cap from my frozen head and replace it with a colder one, strapping it to me as tightly as I could tolerate. My dad would massage the caps in the cooler as they became harder throughout the day from being on ice, in order for them to be shaped and fitted onto my head correctly. The goal: Don’t let your hair follicles get warm, thus preventing the chemo drugs from permeating your delicate strands.

Hair care in between treatments and the six months following the conclusion of my chemotherapy regimen was challenging, and often greasy. Per the instructions from the scalp cooling company providing my caps, I was only able to wash my hair twice a week under an extremely delicate water stream, and of course, in very cold water. I could not apply product to my hair, nor could I use a hair tie to disguise my dirty locks. After each cap session, my scalp would flake off from the freezer burn, which I quickly learned to embrace, as trying to remove the flakes put too much stress on my hair.

I knew the therapy was working when, two weeks after my first infusion, I began to lose my body hair but the hair on my head stubbornly remained. At the conclusion of my chemotherapy treatment, I lost less than 10 percent of my hair — a barely noticeable amount, even to me. My hair began to grow a month later, and has come back thicker than before.

I was able to control my narrative. It was up to me if I wanted to share my story or elaborate on my diagnosis. I was able to do simple things like go to the grocery store and out to dinner without enduring constant stares or being labeled as “the young woman with cancer.” I was able to look in the mirror and still see a resemblance of myself. I was even a bridesmaid in my friend’s wedding a few weeks after my first infusion. To be able to stand with my friends and still feel confident and beautiful was a gift I will never forget.

Although my experience was extremely positive, there was an unexpected downside of using this therapy, especially as treatment ended. Scalp cooling allowed me to keep a sense of privacy and normalcy, but it also made it more difficult for people to understand the gravity of my experience. There is a perception my experience must not have been difficult since I kept my hair. I did not fit the mold of what a sick person looked like, and this resulted in confusion and occasionally insensitive comments. The truth is cancer stripped me of myself. Moving forward after this experience is a different, and often more complex and heartbreaking process. But having hair while I am doing so has been a source of comfort and normalcy in a sea of unknown. Being able to feel some physical resemblance of myself has been instrumental in the process of healing and moving forward.

I’ve learned that hair is not “just hair.” For me, it represented fighting back in every way possible and refusing to let cancer take more than it already had. Maintaining self-image was self-empowerment, self-advocacy, and self-healing.  My hair signifies a girl who advocated for herself, who chose the options right for her regardless of outside opinions, and who refused to relinquish all control during a time of forced surrender. My hair is my crown of victory. I fought back. I won.