The Changing Faces of Cancer- Scalp cooling, Hair loss and Regrowth.

7 minute read time.
The Changing Faces of Cancer- Scalp cooling, Hair loss and Regrowth.

Jane was diagnosed with a rare and aggressive type of endometrial cancer in March 2022. She underwent surgery, chemotherapy, and external beam radiotherapy. During chemotherapy, she decided to scalp cool to try and prevent hair loss. During her Community Champion role, she often comes across people who need support with hair loss and have questions about it. Sometimes pictures can speak louder than words so she has put together a visual timeline to share her experience.

Scalp Cooling- The positives…

But will I lose my hair? Was one of the first questions I asked when told I needed chemotherapy. Hair is not just about vanity, it is part of our identity and although I knew I was really ill, I did not want to look ill. I wanted where I could, to keep any struggles private while I was dealing with them. The thought of losing my hair made me question whether or not to go ahead with treatment. I decided to give scalp cooling a go. I felt I had nothing to lose but hair.

It is important to know that scalp cooling is not suitable for all cancers and it will not work for everyone. Also, not all chemotherapy causes hair loss. Scalp cooling will only affect the hair on your head and it cannot prevent the loss of eyelashes, eyebrows, or any body hair.

I was told scalp cooling aims to reduce the amount of chemo drugs being absorbed through the scalp, to prevent hair loss, to protect hair follicles, to encourage regrowth and to prevent the chance of permanent hair loss.

Scalp cooling- the challenges…

I found it painful. The first 20 minutes or so are the worst. They reduce the temperature of the scalp to around 18-22 degrees. This is cold, very cold. I found that paracetamol does help. For me it was a case of taking deep breaths, focusing on my breathing, trying not to panic, and just knowing that the pain would eventually become a sort of numbness with a tight pressure feeling. There were times when I wanted to rip it off (you can if it becomes too much) but if you can just get through those first minutes, I will say it becomes tolerable. I found taking a warm blanket from home was a comfort and also regular hot drinks.

The other thing is it can add a bit of time to your chemo session. It needs time to cool down before the infusions start and it needs to remain on for a while after the infusions ended. For me this extra time was taken up naturally with waiting for blood test results, going through side effects and medications and generally getting support from the nurses.

Scalp Cooling- The Process

To start with your hair is sprayed with water and conditioner is combed through. This helps ensure contact with the scalp and easier removal.

There are different sized caps, and they must be tight fitting. The first one contains the coolant, and it is blue and rather like a swimming cap. The grey corded one goes over the top. There is a strap that goes under your chin. Once the cap is on you are attached to the machine and it is turned on. It is a weird trickly sensation as the coolant starts to flow and it is surprising how quickly it feels cold. It would be at this point that it would all feel a bit of a shock to the system, I would feel panicky and a bit nauseous.

The cap then stays on until about an hour after chemo finishes. You can disconnect for a few minutes for toilet trips.

When the machine is turned off, you need to sit for around 15 minutes to enable your scalp/hair to defrost a bit. Then slowly you remove the cap. Don’t be alarmed if you see ice crystals at this point.

Hair Care

Hair care is important during scalp cooling. At around 14 days post chemo I would have an itchy/sensitive scalp and shedding would start. However much you are prepared for this to happen, it can feel devastating. Shedding is normal and not a sign it is not working.

Wash hair twice a week using a mild shampoo. Comb hair regularly to prevent any matting with hair that has shed. I would be reluctant to wash my hair or comb it too much as that is when you notice hair loss. But if it has come out there is nothing you can do. I found it helped to try to focus on the hair that was left on my head rather than what was in my hand.

Heated appliances and colouring are not recommended. When your hair does thin then spray in root sprays or hair fibres can disguise any thinner areas. This can really help, I used dry shampoo.

Being prepared with a wig, hat or scarves can help you feel a bit more in control. I found that silky pillowcases can help.

My regrowth after Scalp Cooling

I had some regrowth between chemo cycles. My hair became lighter and changed in texture. I had some chemo curls. Shedding settled down within a couple of months of chemo ending. Regrowth was fast and the condition improved within a few months.

With hair loss, it is important to do what is right for you. For me scalp cooling made the chemo journey manageable. I have no regrets and would do it again. These photos show my journey.

Visual timeline

Chemotherapy May 2022

        

Chemotherapy June 2022

            

Chemotherapy July 2022

selfie of person showing their hair after using the cold cap   Person in a hospital bed wearing a cold cap   Black and white image of someone showing their hair after using the cold cap

Chemotherapy August 2022

selfie of person showing their hair after using the cold cap   Person in a hospital bed wearing a cold cap   selfie of person showing their hair after using the cold cap

Radiotherapy August 2022

selfie of person showing their hair after using the cold cap   Black and white image selfie of person showing their hair after using the cold cap   

Radiotherapy September 2022

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

End of treatment October 2022

Black and white selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment November 2022

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment December 2022

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment February 2023

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment March & April 2023

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment May 2023

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment June & July 2023: 

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment August 2023

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment September 2023

selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Post-treatment October 2023

selfie of person showing their hair after using the cold cap

Post-treatment January and February 2024

selfie of person showing their hair after using the cold cap       selfie of person showing their hair after using the cold cap   selfie of person showing their hair after using the cold cap

Further reading and support information

Anonymous
  • When I had chemo for breast cancer I had a private insurance through my firm and so was able to opt for chemo at home for which I had 3 cold caps to put on high freeze before treatment day.The cheno at home was great. They would come where ever I was in the country to get my blood to check the day before treatment. Each cap was taken out of the freezer and  put on in turn for about 20 minutes. I likened it to the day I went to see the River Severn frozen over when the air was  about -10C. I had 6 treatments 3 weeks apart and the caps worked well except the last sesssion was just before Xmas and I had a different nurse who was not so careful with the result I lost a lot but not all hair afterwards. It grew back curlier than before.That was over 10 years ago.  I thought I might have chemo after the lobotemy for lung cancer and found a nice hat to wear but they say they got it all out so I did not need chemo or radio treatment. For me the radiotherapy was the killer. Done every day on my way home from work for a month, a matter of minutes each time but boy was I exhausted after the month! .They could not say whether it was related to the breast cancer but it is in almost the same spot. It is the unexciting nodules in my thyroid that worry me. What does unexciting mean? I know they said I'm more likely to be run over by a bus. I should have taken more notice of the bus warning as my husband recently fell down the stairs of a double becker bus whilst we spent a few days away on the IOW! He is as sore as I was post operation

  • Hello Jane

    That's a cracking, helpful, informative blog. I knew about "cold capping" but had no idea how it works so that's a great explanation of what the process is and how you feel during the process. It's so good of you to share your personal journey through this and it's very much appreciated.

    Kind Regards - Brian Thumbsup

  • This is fabulous info, thank you!  It’s great to know the exact process.  I so agree with not your comment about not wanting to appear ill even although you feel it.  Also loss of identity too, I’m a wee Scottish ginger and it’s not only a hair colour but part of my personality too.  

  • I had both my ovaries and full debunk surgery in September 2021 for ovarian cancer stage 3

  • Hi Nalini,

    It’s Megan here from the Online Community team, I hope reading the above blog has been helpful. I can see you have already found the Ovarian cancer forum and joined a discussion.

    If you’d like to start your own discussion in the forum, to ask questions or share more information about what brings you to join the Community, I’m sure others with similar experiences come by to offer some support.

    Please remember that alongside accessing peer to peer support, the Macmillan Support Line teams are also here for you. Sometimes it can help to talk things through with someone who’s there to listen. They’re available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

    When you contact the Support Line there will be options to speak to the Information Nurse Specialists, the Information and Support advisers, and the Money and Work teams. They can provide emotional support, practical information, and financial guidance alongside offering a listening ear.

    I hope the above makes sense and if you need any help using the Online Community, please email community@macmillan.org.uk and we will be happy to help.  

    Best wishes, 

    Megan
    Macmillan's Online Community team