What I learned using scalp cooling

On January 9, 2019, I was anxiously awaiting news from my fertility specialist telling me I was clear to start fertility treatments. The thought of cancer didn’t even cross my mind and I was just excited to start our journey to becoming parents. I did get a call, a life-changing call. It wasn’t from my fertility specialist as I expected; it was my physician. All I really remember is her saying, “Erica, I am so sorry, but you have breast cancer.” The rest was a blur, but I had two thoughts. The first was, “I don’t want to have to tell Josh and my family.” The second was, “I don’t want to be bald.”

I was diagnosed with “highly aggressive" triple-negative, stage II, invasive ductal carcinoma (try saying that three times fast), and we had to start chemo ASAP, but with the blessing from my oncologist in getting our little eggs first. My treatment plan was to have eight chemotherapy treatments — one every other week for 16 weeks — heal, then have surgery.

One of my biggest worries was losing my hair. Many people said to me, “Oh, it's just hair; it will grow back.” That may be true, but I LOVE my hair. No, it doesn't define me, but my hair gives me confidence. It makes me feel pretty and most of all NORMAL. I didn’t want to look sick. Being able to live as normal a life as possible while going through treatment was important to me. When my oncologist told me that there could be hope of saving my hair by using the Paxman Scalp Cooling system, I wanted to know more.

I learned that the scalp cooling had different success rates for different people depending on things like what treatments they are taking. I took a leap of faith trying scalp cooling and am so glad I did. There are some things I learned about scalp cooling that I want to share with you.

I found that many insurance companies do not cover scalp cooling systems, so it is an additional out-of-pocket expense. The price can vary from about $1,000 to $3,000. There are many nonprofit organizations that can help, but it is something to plan for.

Using the scalp cooling can add time to your chemo days! I had to put the cap on 30 minutes before treatment, wear it the entire time, and wear it for 90 minutes after chemo treatment ended. It makes for a long day, but again, the hope of keeping my hair made it worth it. It also distracted me from being pumped full of poison and kept my mind elsewhere.

There are two different types of cold caps. I used a machine system that cycles coolant through a refrigerated unit to keep the cap cold. There are also cold caps that come in a set that you swap periodically while you are in chemo. Both options have similar results and pain points.

Was it comfortable? No, it is not comfortable. In fact, it’s quite unpleasant. People many times asked me, “Is it uncomfortable because it is cold?” That is what you would think. It is super cold for about the first 10-ish minutes, but then your scalp kind of numbs out and you get used to it. What’s worse is the tightness of the two layers of caps on your head. The point is to ensure you have the cold equally distributed across your whole scalp, so you have a second cap with a strap that goes under your chin that holds it down tight on your head. I would always get a headache, so I took Tylenol to help with the discomfort.

I was able to keep about 60 percent of my hair. Even though I lost a lot of hair, I was never bald and to me that was a HUGE blessing. I had some light shedding after my first chemo treatment and that was traumatic, but no one would have known. I was able to go about during treatment looking normal.

Something that I was not prepared for was that I would finish treatment and have another wave of hair loss. I became very self-conscious during that time. I chose to wear a wig that I had prepared as a back-up in case the cold cap didn’t work. I wore her (I named my wig Christine) as my new hair was growing in. I felt you could see a lot of my scalp and that made me insecure, so for 2 to 3 months I chose to wear Christine. When I had some peach fuzz growing back, I just wore my hair in a little ponytail.

Another positive about using cold caps is that my new hair growth is coming back the same color and texture as before treatment. I heard from many women who said that their hair came back a different color or texture after chemo. Many got what you may hear called “chemo curl.” My hair is coming back nearly identical as before, texture, density, and color, which to me is a huge win!

What I loved about having access to and using scalp cooling is that even though those 16 weeks were not fun or easy, I was able to maintain a fairly normal life, while looking normal too. Many people close to me knew what I was going through, but a great number didn’t, which I loved. I never wanted to look sick. I wasn’t sick; I was just fighting cancer! I was a young-ish, active, and healthy person. I didn’t want people looking at me with sympathy or treating me differently because I was “sick.”

I am so grateful for the opportunity to use scalp cooling and that I was able to save my hair. Not all of it, but A LOT more than being bald. I pray I never have to go through this again, but if I did, I would use a scalp cooling again in a heartbeat.

Erica DeTar was diagnosed with stage II, triple-negative breast cancer in early 2019. She and her husband Josh founded the One Nine Bestrong Foundation to help offset the out-of-pocket costs of scalp cooling for people getting chemotherapy.