Some truths about cold capping during chemo

Five years ago, I learned I had to go through chemotherapy to help clear breast cancer. I thankfully had the opportunity to try to prevent hair loss through cold capping, which saved most of my hair. Awareness of this valuable resource is still growing so I want to share some truths about cold capping during chemo.

Trying to prevent hair loss during chemo was my personal choice

Cold capping during chemo

I was bald for 15 months during chemo treatment for osteosarcoma when I was 21. It was incredibly challenging and a daily reminder of fighting cancer. So when I faced clearing breast cancer and then learned that four rounds of chemo were recommended in the breast cancer protocol, it was a punch to the gut (for many reasons). However, chemo lowered my long-term recurrence risk quite a bit, leading me to choose to endure the drugs.

But the prospect of losing my hair again didn’t sit well with me. As much as others say losing their hair was no big deal, it was to me. When my oncologist suggested I consider cold capping during chemo, my curiosity piqued. In addition to hoping to not lose much hair, one of the chemo drugs I took can cause permanent hair loss in 5-10 percent of patients. Cold capping could help preserve the hair follicles to prevent permanent hair loss.

Losing your hair because of cancer treatment is devastating to many. It’s another reminder of the scary disease you are facing. So please don’t EVER tell someone facing chemo and the loss of hair that ‘it’s just hair.’ And ‘it will grow back’ doesn’t help either (there are risks of permanent loss for some people).

Freezing those hair follicles during cold capping

Cold cap therapy is the process of cooling your scalp to essentially ‘close off’ hair follicles to the chemo drugs that kill those cells. The cooling system works by narrowing blood vessels beneath the scalp to reduce chemo reaching hair follicles. This hopefully reduces the amount of hair that falls out. The cold also decreases the activity of the hair follicles, slowing down cell division and making the follicles less affected by chemo (breast explains it in more detail). The caps are tightly-fitted, strapped-on hats filled with a gel coolant that’s chilled to between -15 to -40 degrees Fahrenheit (yes, it’s cold! Believe it or not, I got used to it after the first 30 minutes or so). 

There are many different companies providing cold cap therapy. Manual caps are those you change at specific time intervals, your capping team manually puts on/takes off and you maintain the temperature. A cooling system is a machine that flows coolant through the cap (the cap doesn’t need to be changed during the cooling time). There are pros/cons to every option. I used manual caps, mostly because my oncologist and other cancer survivors recommended and my oncology clinic offered an onsite freezer to store the caps.

Some truths about cold capping during chemo:

It does work – but not for everyone.

I saved about 60% of my hair during chemo. While that is considered successful, it was honestly still tough to lose that much. The shedding brought back a lot of PTSD from being bald during bone cancer. But I wasn’t bald this time and that was my overall goal. Plus my hair started growing back in even before my last chemo round! There is no guarantee that hair will be saved. Kind of like every body reacts differently to a chemo drug, so too does your hair. I met some women who barely lost any hair, while others lost most. But the idea is that it’s helping protect hair follicles.

Cold capping also works for solid tumor types (breast cancer, ovarian cancer, etc.). Some chemo drugs are harder for success than others too. Please do not take my word for it – I definitely recommend talking to your doctor and directly to the cold capping company for input.

It provides normalcy and privacy to cancer survivors.

A lot of people who cold cap do it to provide a sense of normalcy. Cancer wreaks so much havoc on lives. Being able to keep your hair can help with the emotional upheaval. While I knew that my hair was shedding and thinner than before chemo, acquaintances and strangers didn’t know unless I shared with people that I was going through chemo. Since I worked full time during treatment, it was nice to lead meetings and do my work without cancer being top of mind to myself and others. That was incredibly refreshing.

It can be expensive.

Cost of capping can be a roadblock to some patients, which is super frustrating. Cost varies by cold cap companies, how many treatments needed, etc. Several cooling systems are FDA approved. This is great news because it’s led some insurance companies to start paying for cold cap therapy. Call your insurance company directly to ask about coverage. If insurance refuses to cover cold cap therapy, check local and national foundations and your cancer center for assistance. My insurance unfortunately didn’t cover the cost, however, I connected with a foundation that helped offset costs.

It’s work.

5 years later, grateful for my health and hair!

I’ll be honest that it was more work to maintain my hair than I thought it would be. Funny enough, the actual cold capping process wasn’t too bad – cold, absolutely! But bearable. It was the maintenance between chemo. There are many guidelines to follow, such as when to wash your hair and with only cool water, use satin pillowcases, be careful of sweating/heating your scalp and more. No unbearable guidelines but it does get tiring after weeks of doing it. Most people (including me) choose to continue variation of the guidelines for a few months after until your hair is healthy, not shedding again.

I’m still happy that I did it. Losing your hair because of cancer and chemo is hard. I didn’t want to go through it again and am thankful that I didn’t have to.

I shared more pros/cons about cold capping during chemo on this blog post when treatment was finishing.

Let’s support and respect each other through tough times.

Regardless of whether someone loses their hair to chemo or chooses to try cold capping, there is no right or wrong. Because facing cancer is challenging enough.

The truth about cold capping during chemo is that it’s a personal decision. Nothing can take away from the mental and emotional impact of going through cancer. However, if trying to prevent hair loss from chemo helps someone navigate treatment and cancer, then why not support them?

I was stunned at how many people commented and judged me on trying to save my hair! Even other cancer survivors. It also surprised me how people assumed my chemo protocol wasn’t ‘that bad’ because I wasn’t bald so didn’t ‘look like a cancer patient.’ Yikes, did society’s judgements and stereotypes appear. To be clear, there is no good chemo. Poison is poison. But putting stupid comments aside, I’m thankful for the opportunity to cold cap and save most of my hair.

I hope this helps you have a better understanding about cold capping. Please also consider sharing with someone who may want to cold cap or simply with others so there is better awareness of this resource.

Remember: at the end of the day, fighting cancer is our common goal and supporting each other should be part of the treatment plan.

Note: The content of this blog post or other posts on this site are meant as professional healthcare advice. The content shared here is provided from personal, not professional, experience only. Please speak to a professional healthcare provider about medical conditions, your own health, cold capping and any other issues. Any actions you take are done at your own risk. View our terms and conditions and disclaimer for more information.

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