Cold-Capping and Hair Loss
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“You mean the kind of chemo where I’ll go bald?!?!”
I’m sure my surgical oncologist must’ve thought I was ridiculous as she responded back “Yes, but it will grow back.” I will never forget how I felt getting off of that phone call. It had only been a couple of weeks since I had found the lump while nursing my 11 month old son… a small lump… a lump that MUST just be a clogged milk duct or cyst, right?!
“You WILL change. I changed, for the better. ”
The night prior to this phone call I had gotten an email that informed me that Mychart had my pathology report logged. I clicked on it and scrolled, and scrolled, and kept scrolling, all while looking for the word “benign” to appear. It never did.
In all bold letters, in the middle of the report, it read INVASIVE DUCTAL CARCINOMA Grade 3. Like any good sleuth, off to Dr. Google I went to see what in the world this meant. I was not well versed in cancer lingo… in fact, no one in my family had ever had cancer, let alone breast cancer. I called my husband and subsequent family members, saying the words out loud but barely believing them myself. I figured, ok, I have a lump, they will probably just cut it out and then I’ll go about my business and that’s that!
After what seemed like the slowest 18 hours of my life, the surgical oncologist finally called and informed me that I would need surgery, chemo AND radiation.
Hearing I would need chemo hit me like a ton of bricks. I remember asking the surgical oncologist if I would be ok and she responded “we will just take it one step at a time.” That is not the answer ANYONE wants to hear. A million horrible thoughts rushed into my head. I have a four year old daughter and my son had just turned one FIVE days ago. I want to be around for them. And then the thought that no parent ever wants to think crossed into my mind- that if anything happened to me, they wouldn’t even remember me. To this day, this thought still rocks me to my core. I hung up the phone, took one step and my knees fell to the floor. And I sobbed. I was scared. I was terrified. I was shocked. I remember trying to choke out the words “I need chemo” between sobs and gasps.
“And then the thought that no parent ever wants to think crossed into my mind, that if anything happened to me, they wouldn’t even remember me.”
Now, I’m sure when everyone hears of chemo, they think of two things… sickness and losing your hair. I felt fine… the idea that I would have to feel sick to get better was so foreign to me. Next was the physical change. My hair is long, I knew it would probably take a decade to grow my hair back to this length. My vanity definitely kicked in knowing that I was going to physically look completely different. Would I even recognize myself in the mirror? I was born with a good head of hair, I have literally NEVER been bald. I wondered, “is my head misshapen?” “will I look the same with a wig?,” “will it grow back the same?” and “when I leave my house will everyone stare at me?”
As the weeks passed and I got more information on my diagnosis, we explained to my daughter Anna what was happening. My sister-in-law had gotten us a children’s book that walked through the different parts of treatment (surgery, chemo then radiation). When I explained to her that I would lose my hair and go bald she was SO upset. Crying hysterically saying “you won’t be my mommy anymore,” “I’ll be scared of you,” and my favorite “you’re going to look like Uncle Jeremy!!” (who shaves his head). In the book, the mother loses her hair and everytime we would read the book, Anna would start crying telling me that she didn’t want me to go bald.
I started researching to see if there was anything I could do to avoid going bald. Once again, Dr. Google came to the rescue and “cold capping” came up on my search feed.
I joined some groups on Facebook and was lucky enough to meet someone in Raleigh who was my age, also triple positive BC and successfully cold capped. When I met with my oncologist for the first time, I had lots of questions about cold capping and she was on board with me trying. The facility had a grant for a capping machine but unfortunately, the grant only allowed people with 6 or less treatments to use it. My regimen would be 12 rounds, and I didn’t qualify to use the machine at the facility.
This was upsetting at first because the automatic machine didn’t require me to have someone “cap” me (the nurses would do it) and I didn’t need to worry about purchasing dry ice and renting caps. For weeks, I went back and forth about capping. But every time I brought up losing my hair to my daughter she would get extremely upset. I figured, why not give it a try?? Even if it doesn’t work, at least I can say I tried it.
After tons of research, I found out that Penguin caps had the highest ratings so I decided to try those. You can rent them for $500/month (+ the cost of dry ice) and there is an excellent program, HairToStay, that will help pay for the cost of the caps - they paid for half of mine!
Preparation
In the days leading up to chemo, I went wig shopping and found a wig that I really liked just in case the capping was unsuccessful. I even took my daughter with me on one of the trips so she could try on wigs and she had a blast pretending to be “Elsa” or “Auntie Julie” with the different wig colors and styles.
Finally, the week of chemo had arrived and my caps were delivered. I was surprised by how heavy they were and wondered how I was going to handle having them on my head - luckily I have a good chiropractor! I also hired a capping expert from Penguin to teach my sister how to cap me. It was a onetime cost of about $350 and worth every penny. She explained everything and also did a trial run with dry ice so I could see how cold the caps would be. In a way, I think I was more nervous about capping than I was about the chemo! It’s definitely scary to think about putting something -40°F on your head and leaving it on for 8 hours!
But once I actually tried it, it wasn’t nearly as bad as I had built it up in my mind (just like most things related to cancer treatment). Don’t get me wrong, the first few minutes it’s cold… really cold… but I was prepared with a heated blanket, heating pad and warm clothes. Luckily, after about 10 minutes, your head goes numb and the cold doesn’t really bother you anymore. My oncologist also insisted I take Ativan while capping, which definitely helped to take the edge off and make it tolerable.
Chemo: Day One
On my first day of chemo, my sister and I were both a ball of nerves - I was mainly scared of the harpoon type needle they were about to jam into my chest! We had everything scheduled and timed perfectly. I woke up, changed into my “chemo outfit,” popped an Ativan in my mouth, placed a large dollop of lidocaine cream on my port, covered it in saran wrap, and off we went! First stop, the dry ice supplier.
After the cooler was packed with the caps and dry ice, we were off to the cancer center. With Penguin caps, you have to cap an hour before chemo, all during, and 4 hours after chemo. The caps are between -35 to -40°F when they are put on your head and changed out every 22 minutes.
Prior to putting the caps on, there is some fancy headgear you need to sport to help protect your head from frostbite. The first, and most “interesting,” is panty-liners on your forehead and down the sides of your face along your hairline. We drew a stencil of my hairline , to ensure it looked the same. After the panty-liners we put little earmuffs on my ears and then I would flip my hair over to the opposite side of where I normally part it to cover my usual part from getting frostbite. From there we would place a hairnet on top to keep it all in place. Then it was time for the caps.
I am thankful every day that my sister was there with me, it brought us closer together and she was the only one who truly got to see what I went through every week. She took her job as my capper very seriously and is the reason why I still have my hair today.
I’m not going to lie, by round 8, the capping started to feel daunting. Chemo days were long and the hours and hours of feeling cold mixed with the medications made me very tired. But it was working. There were days where I definitely noticed more shedding but I also didn’t follow all of the capping rules.
Rules of Cold-Capping
These rules are to be followed all during chemo and for SIX months afterwards:
No hot showers, hair must be washed in cold water
No heat styling or tools (aka hair dryer, straightener, curling iron etc)
Sleep on a silk pillowcase
No pulling on your hair and if you have to have a ponytail, you need to use a silk scrunchie
Use all organic products on your hair
Use all natural deodorant
No getting your head hot
I am an avid runner, so this last rule was the one I broke. I ran, a lot, during chemo, in the middle of the summer heat in NC.
When I called Penguin to ask them about sweating during exercise, they simply told me that most people don’t feel well enough to exercise during chemo and they didn’t have a lot of experience with it. I will say that this probably did cause me to lose some of my hair but it was worth it to keep my mental sanity. I needed to run to feel “normal” and it has always been a way of stress relief and a time to myself to gather my thoughts. In a way, running was more important to me than my hair, so I did both.
When capping, “wash” day is always the scariest day of the week in terms of hair loss. By about week three, when I would very gently wash my hair, I started noticing hair coming out in between my fingers. Then while brushing it after the shower, I would notice the highest amount of shedding in the brush. Some days hair would be all over me and I would wonder how much I had lost in a single day. But I tried to focus on the hair I still had, instead of getting upset over the hair I was losing.
I am now four weeks PFC and have kept about 70% of my hair. It has thinned, similar to postpartum hair loss, so I don’t have any bald patches but it has just thinned overall. Capping allowed me to keep a sense of normalcy during chemo. People didn’t know I was sick when I went out and I liked that it helped maintain my privacy in that way, although I did have to explain many times that I was doing cold capping because people actually didn’t believe I was going through chemo (or they would look at me very confused).
“In a way, running was more important to me than my hair, so I did both.”
The biggest advantage was that it allowed a sense of normalcy for my daughter. She didn’t have to see a huge physical change in me. She knew I was wearing the “silly big blue cap” so that mommy could keep her hair and that brought her relief and comfort. And that helped to alleviate one of my biggest fears, which was the impact it would have on my children. So for that reason alone, it was worth me being a frozen popsicle for 12 Wednesday’s in a row. 😊 And regardless if you keep your hair or lose it, either way you won’t be able to recognize yourself in the mirror.
You WILL change. I changed, for the better. I look in the mirror now and see a person without eyelashes or eyebrows and messy hair who is strong, tough, more appreciative of each day and surrounded by love.
Losing your hair is hard and keeping your hair is hard, CANCER is hard. But it can also be a blessing, I know it has been for me.
For more information and cold-capping resources, check out Living Beyond Breast Cancer’s Scalp Cooling page
Author Bio: Susan is a native of Canada and currently resides in Raleigh, NC with her husband, 2 young children and sweet hound dog/poodle mix. She was diagnosed with triple positive breast cancer in January of 2021. Susan loves photography, singing, running and traveling around the world.
Susan is a native of Canada and currently resides in Raleigh, NC with her husband, two young children and sweet hound dog/poodle mix. She was diagnosed with triple positive breast cancer in January of 2021 and details for us her experience with hair loss prevention and cold-capping in the face of chemo-related hair loss.