Cold Caps

I was successfully treated for stage 1 breast cancer in 2016 and I’ve been cancer free ever since! The best possible gift from that experience is to be able to share what I learned from it with others—to offer advice and encouragement to those on a similar journey, to spread the word about cold cap therapy for protecting hair during chemo, and to share some recommendations for anyone looking for safer hair & beauty products. I hope you might find something useful, hopeful, or inspiring here. 

TONI'S CANCER JOURNEY | TONI'S ADVICE FOR AN EARLY STAGE BREAST CANCER DIAGNOSIS

COLD CAPS | RECOMMENDATIONS FOR SAFER PRODUCTS

Depending upon where you live, you may or may not know what cold caps are.  I had never heard of them despite living in a fairly large city.  So to cut to the chase, cold caps are a way to save your hair during chemo.  That’s right, there’s been technology for over 20 years that can allow many people to keep their hair during chemotherapy! 

Cold caps are fabric caps containing a gel solution that are worn during chemo treatments.  The caps are chilled to around -25 to -30 degrees (you read those minus signs right, by the way). They work by freezing the hair follicles during chemo and this keeps the chemo drugs from making the hair fall out.

In the UK, this process is more widely used.  In the US, not so much.  Why?  Very few clinical trials and no FDA approval.  Chances are your doctors won’t tell you they exist, but when you mention them, they’ll know what they are.  Mind you, I gather this varies wildly from area to area—some cities have oncology offices that are actually facilitating the use of cold caps now—but by and large, this is pretty spotty, and for the most part, in the United States, you’ll be on your own when it comes to finding out about them, learning about them, and using them.

Now here are some disclaimers:  They’re pricy, the process can be complex and grueling, using them successfully requires following a lot of rules, and they may not work for everyone.

The upside:  If you commit to using them, and you follow the rules, there’s a pretty good chance you’ll keep at least some of your hair during chemo.  They work really great for many people, and I have a friend who kept almost all of her hair through thirty chemo treatments!

My personal experience with cold caps:  There’s no getting around it—I lost a lot of my hair.  But a lot is not all, and you’d be surprised at how little hair you can get by with and still look fairly normal. ;). For me, that’s what it was about—a desire to just keep feeling as normal as possible, to not add the indignity of hair loss to what is already a tough time if I could possibly help it.

And the further fact is, colds caps may not work as well on people with thick hair—and I had extremely thick hair.  But I tried it anyway, doing my best and following all the rules, and I don’t regret using them at all, because despite losing about 80% of my hair, I’m able to get by with headbands and ball caps right now rather than wigs.

My personal advice is:  If you really love your hair, if it’s really important to you, investigate using cold caps.  They require a financial investment, a lot of organization, and some helpers to facilitate the process—and they’re cold on your head.  Really cold.  But it’s an option, and that’s very important to me:  to let you know there is an option for trying to keep your hair during chemotherapy. 

Personal side note:  It’s okay to love and value your hair.  During this period, people will say kind things to you, like that you’re more than just your hair, it will grow back, hair isn’t important.  And I am truly grateful for those kindnesses.  But oftentimes the message you might feel you’re getting is:  It’s frivolous or trivial to worry about your hair at a time like this.  And I’m just here to say that if, like me, you care a lot about your hair, it’s not frivolous, it’s not trivial, it’s okay to love your hair and want to keep it.  It’s all about just feeling normal, feeling like you, and holding on to as many parts of your normal identity as you can as you take this journey.

I will admit that while I’m coping fine, the hair loss has been one of the hardest parts of this for me because I seriously loved my hair.  And I look forward to loving it again.  And while I’m mourning the loss of that 80%, I’m ever so thankful for every remaining hair I have—and that’s due to the cold caps.

If even one woman saves her hair because she learned about cold caps through this page, I will be very happy. :)

Some helpful links about cold caps:
Penguin Cold Caps
The Rapunzel Project