Scalp cooling: What does success look like?

“Get a wig in a different style or color than how you currently wear your hair!”

“Oh!  You can wear some really cute scarves!”

“Since it is winter no one will notice that you are wearing a lot of beanies.” (No one other than me, that is.)

Well-meaning sentiments, certainly. But, why wear a wig when I could keep my hair? Wanting to keep my own hair shouldn’t have been treated as a privilege or luxury.

The Paxman Scalp Cooling System was approved by the Food and Drug Administration less than 6 months before my diagnosis. When my oncologist, Dr. Lori, mentioned it to my husband and me during our initial appointment with her, we had never heard of it. If there was a way for me to be in control of something during treatment, I wanted to take a look at it.

Upon doing my own research, I was very surprised at the results women all around the world had experienced using the cold cap (aptly named, by the way). I did more than read personal testimonies; I read data from clinical trials that had been conducted worldwide. It gave me hope that I could have something be “normal” during a time when life would be anything but.

If I’m being honest, I didn’t know what to expect from using a scalp cooling system other than being cold. Not my favorite thing by a long shot! Although I was familiar with the clinical results, there was no guarantee it would work for me. The fact of the matter is that some people experience permanent hair loss due to chemo. Trying scalp cooling was a risk I was willing to take. Maintaining some quality of life was important.

I didn’t want to wait for years for my hair to grow back out. I didn’t want to catch a glimpse of my bald head in a mirror or window reflection. I didn’t want to look at pictures years down the road and be reminded. I wanted to go about my day and not have people wonder how they should interact with me. It wasn’t just about me. I didn’t want my husband to worry about how to protect me from unwanted stares or unkind comments. Was that too much to ask?

Not only do I consider my results to be successful, they were very successful. Each week I took a picture of the top of my head to document the hair loss. The longer I was on chemo (12 consecutive weeks) the more hair I lost each week, but in the end the process helped me keep over 90 percent of my hair! I had some thinning on the sides and a small patch along the hairline. Not bad. Not enough to notice. When interacting with people that did not know I was sick, they would have never guessed if judging by my hair.

When I talk to others considering scalp cooling, I tell them that it isn’t just about following the recommendations for handling your hair during treatment. For the highest rate of success, you have to follow the spirit of the recommendations. Be all in. Commit to the process. The name of the game is to be gentle with your hair.

Some factors, like how to care for your hair, play a role in the success of this therapy. Special shampoo (provided in the kit), no styling tools, no braiding, no pulling back in a bun or ponytail, and limiting the washing frequency are all key parts in the overall picture. I slept in a beanie to keep me from tugging on my hair during the night.

During treatment and the following 6 weeks, I continued getting my hair cut on my normal schedule. My stylist was very aware of the recommendations I was given for scalp cooling and used great care in how she handled my hair. Since there was no need to go with a short haircut before I started treatment; my hair style and length remained the same. WHEW! One less thing to change!

Even if you lose hair, and you will lose some, you are protecting the hair follicles. That allows your hair to regrow sooner. One thing to keep in mind: using the cold cap only protects the hair on your scalp. I lost my eyelashes and eyebrows.

In the end, I am very happy I used scalp cooling. Even on the days I felt my worst, I could look in the mirror and see hair. Lots of it. Quite honestly it helped my self-esteem. I also believed it helped my recovery because I didn’t have a constant reminder.

Yes, the prep and process can seem daunting. Some days having a wet, frozen head and being cold while getting a chemotherapy infusion seems more than one can take. If you were to ask me if I recommend it or if it was worth it, I would say yes and yes.  Remember, the discomfort of scalp cooling is only temporary.

Brenda,  53, was diagnosed with early-stage breast cancer in October, 2017. Some identifying information has been withheld by request.

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