What is scalp cooling? The basics

What is scalp cooling?  – The basics

Scalp cooling is one of those things that until you are faced with the possibility of losing your hair you probably won’t have heard much about. Questions such as what is scalp cooling?, how does scalp cooling work? and does scalp cooling prevent hair loss? are some of the first thoughts most people have.

When your hair doesn’t fall out it means that you can keep your cancer diagnosis private, take some control over your treatment and ultimately it can help to boost your confidence and face treatment more positively.

At Cancer Hair Care we have always supported every person’s right to be offered scalp cooling if they wish. There is nothing negative about making a decision to not try scalp cooling or indeed to stop scalp cooling if having tried it; it’s not for you. The choice is what’s important.

In our opinion scalp cooling is an in-depth subject. At Cancer Hair Care we aim to offer you independent and expert guidance and ideas alongside guidance given by your healthcare provider and scalp cooling manufacturer.

In this section we will take you through a detailed overview so that you know what scalp cooling offers and if it is something that may be suitable for you.

• Positive reasons to try scalp cooling
• What is the intended purpose of scalp cooling?
• How does scalp cooling work to minimise hair loss?
• Does the scalp cooling prevent hair loss of eyelashes and eyebrows?
• Who is scalp cooling suitable for?
• What are the different types of scalp cooling systems?
• Who are the different scalp cooling manufacturers?
• How effective is scalp cooling?
• Are there any side effects to scalp cooling treatments?
• How can I find out if my hospital/health care provider will offer scalp cooling?
• How comfortable is scalp cooling?
• Is it true that scalp cooling will make my total treatment time longer?
• Can I skip a session of scalp cooling?
• Will I need to change my regular hairstyle and hair care routine?

Positive ideas about scalp cooling

At Cancer Hair Care we have always supported every person’s right to be offered scalp cooling if they wish. There is nothing negative about making a decision to not try scalp cooling or indeed to stop scalp cooling if having tried it; it’s not for you. The choice is what is important.

With this in mind below you will discover some positive reasons about scalp cooling.

Taking control  – You won’t know if scalp cooling will or will not be successful until you try it but you can take control by giving it a go.

“I couldn’t control the cancer or the type of treatment plan I was given but I could do this. Scalp cooling meant that I felt I had something that I could actively do during treatment to help myself. I lost around 40% of my total mass of hair but I didn’t need to wear a wig and so it worked for me”. Julie

Positive body image – Many people say that reducing hair loss meant they felt more positive towards themselves at a time when they were feeling under confident with changes to their body.

“I continued to work throughout treatment and so it was important for me to try and look professional and feel like myself. My hair did thin a lot but I managed to find ways to make it look fuller and luckily a hot summer meant that everyone was wearing sun hats.“ Christine

You decide – Trying scalp cooling doesn’t mean that you can’t decide to stop if it’s not for you. If you are offered scalp cooling and then for any reason decide to stop you can do so knowing that there are many options available to adjust to hair loss.

“I gave scalp cooling a go but after the first round I noticed a lot of my hair falling out and so I decided to stop. To be honest I wish I had of known all the tips and tricks I now know – as I would not have given up. Back when I had my treatment I didn’t know about Cancer Hair Care and so I stopped scalp cooling. I wore wigs and scarves and got used to having no hair but I found it a challenge. Now I am an advisor for Cancer Hair Care and support many women during scalp cooling. It really is a personal choice. I was glad I tried it, a bit sad that I didn’t know what I know now and I am always happy to see many women successfully complete scalp cooling” Sally

Privacy – Many people who managed to maintain a hairstyle throughout treatment said that it helped them to remain fully private about cancer treatment. Whereas people who lose their hair often feel the need to explain their change in look (e.g. wearing a scarf or wig to work) to colleagues, friends and family.

“My hair has always been a talking feature of my image. Having long dark Afro hair that is abundant and full meant that loosing my hair would need some explaining to friends and work colleagues. Luckily scalp cooling did reduce the amount of hair I lost and so I could keep my treatment private. I wish everyone luck with their choice. I feel lucky that it worked for me” Ajanti

Sense of achievement  – Juggling chemotherapy treatment as well as scalp cooling is an added aspect to manage. Many people say they had a feeling of achievement when they managed scalp cooling.

“Chemo was hard and facing hair loss was daunting for me. So giving scalp cooling a go was something I could actively do. It helped to occupy my mind during treatment. I was very lucky to only lose about 10% of my hair mass as I know others lose more. I wore my regular style throughout treatment and didn’t need to tell others about cancer” Anne

More social interaction – Many people tell us that minimizing hair loss, even if they lose a lot of hair, but still keep some of their own hair, helped them to maintain more social interaction.  Attending social occasions, work, engagements, appointments and daily tasks were easier when not having to consider full hair loss.

“I went to a support group throughout my treatment and many women there had not been offered scalp cooling and so were dealing with hair loss. They talked about how they needed to really consider activities such as shopping and social events in terms of if they wore a wig, went bare or had a hat on. I felt very lucky that because of scalp cooling I kept my hair and didn’t need to think about these things. The ladies did look lovely in their wigs and scarves but I knew that they had an added worry”. Jenna

The expert’s opinion

“I have supported thousands of women during cancer treatment and have always wholeheartedly supported everyone’s choice to be offered scalp cooling. I find that if supported, the vast majority of people who try scalp cooling will continue throughout chemotherapy treatment and have an empowering experience.

To feel empowered I know that what people need is tips on every aspect of scalp cooling. From how to best shampoo and condition their hair to what to do if hair starts to fall out. When this support is given I’ve seen women really take charge of their treatment and continue to live their regular daily lives in a way that women who have had to deal with complete hair loss haven’t been able to.

The only way to know if it will work for you is to give it a go. We are here to support you during your treatment“ Jasmin Julia Gupta, Founder of Charity Cancer Hair Care

What is the intended purpose of scalp cooling?

The aim of scalp cooling is to try and reduce the amount of hair loss as a side effect to chemotherapy so that you can maintain as much of a regular hairstyle as possible.

When your hair doesn’t fall out it means that you can keep your cancer diagnosis private, take some control over your treatment and ultimately helps to boost your confidence and face treatment more positively.

Ultimately it is about empowering you to try and take control of hair loss.

How does scalp cooling work to minimise hair loss?

Is there a way to prevent hair loss during chemo and does scalp cooling prevent hair loss?

Let’s have a look at the two main theories about how scalp cooling works.

1. The lowered temperature of the scalp is understood to result in a reduced blood flow to the hair follicles. Effectively this means that less chemotherapy drug reaches the hair follicle resulting in less disruption.

2. In addition the reduced temperature is thought to slow down the metabolic rate of the hair cells. This can be likened to the cells hibernating during scalp cooling.

As a result of these two theories, the hair is less likely to fall out.

Tip: take a look at information provided by your health care providers choice of scalp cooling manufacturer.

Does the scalp cooling prevent hair loss of eyelashes and eyebrows?

Scalp cooling is designed to only help minimise hair loss on the scalp. Therefore loss of eyelashes, brows and other facial and body hair is to be expected. Our Eyebrows and eyelashes guide will help to give you ideas of how to look good with hair loss.

Who is scalp cooling suitable for?

In basic terms female and male adults will be suitable for scalp cooling if:

• Your healthcare provider offers it
• You have a solid tumour (not suitable for blood cancers)
• Your chemotherapy drug regime is compatible with scalp cooling
• You do not have any medical conditions that make scalp cooling unsuitable
• Your oncologist is happy for you to try it

In more detail:

Scalp cooling is compatible with all hair types, textures and styles.

Scalp cooling is not compatible with every type of chemotherapy drug and may be unsuitable for people with particular types of cancer and other medical conditions.

You may also find that your health care provider does not provide scalp cooling as an option. This is because not every hospital or home care provider offers this facility.

Your oncologist and cancer nurse will know if scalp cooling is medically suitable for you and if your health care provider offers scalp cooling.

Where a health care provider (hospital, home care or private) does offer scalp cooling it can be offered to both men and women and in some cases to young people (teenagers).

It is well documented that you cannot use scalp cooling if you have any of the following medical conditions:

Haematological malignancies (leukaemia, non Hodgkins and other generalised lymphomas)
Cold allergy
Cold agglutinins
Manifest scalp metastases
Imminent bone marrow ablation chemotherapy
Imminent skull irradiation
Other condition that is of concern to your doctor

Tip: take a look at information provided by your health care providers choice of scalp cooling manufacturer.

What are the different types of scalp cooling systems?

At the time of writing there are two types of systems that are commonly used.

Refrigerated cooling system  – that continuously pumps liquid coolant through a cold cap to help to lower the temperature of the scalp

Or

Manual system gel cap – a cold cap that is filled with a cold gel that is precooled in a freezer or frozen ice system.  This type of cap needs to be changed several times during treatment.

The cold cap

A cold cap is the name commonly given to the helmet shaped cap system that is worn as part of scalp cooling treatment.  Caps come in a range of sizes – a good cap fit is essential to best support effective scalp cooling.

There are two basic parts to most systems:

Refrigerated cooling system

Inner cap – the inner cap is attached directly to the refrigerated cooling system that circulates a coolant around the cap to maintain a consistent cool temperature.  For example the Paxman inner cap maintains a temperature of around -1 Celsius (note – the scalp only lowers to a temperature between 18 to 21 degrees Celsius).

The inner cap is placed directly onto the hair and scalp.

The cap can be detached for a limited amount of time during treatment for comfort breaks.

Designs vary depending on manufacturer.

Outer cap – the outer cap is placed over the inner cap and helps to create a snug and secure fit of the inner cap. Additionally, outer caps help to insulate the inner caps, helping to aid a constant cool temperature.

The cold cap is worn for some time before, during and after your chemotherapy treatment.

Designs vary depending on manufacturer and models.

Manual system gel cap

A manual cap has gel coolants attached to the inside of the cap. Once removed from the freezer or dry ice system, the cap is placed on the head and secured with Velcro and additional tightening belts.

Designs vary depending on manufacturer and models.

Tip: take a look at information provided by your health care providers choice of scalp cooling manufacturer.

Who are the different scalp cooling manufacturers?

It really is essential to make sure that you know who your scalp cooling manufacturer is. This is because the cold caps, whilst all have the same aim to help reduce hair loss, do vary in design. With this in mind each manufacturer will provide different guidance on best practice for your hair care.

We have developed our guidance to be used alongside any suggestions made by your brand of scalp cooling. The idea is to enhance it not replace it.

With scalp cooling being used globally there are several different manufacturers and suppliers who provide cold caps.

The main manufactures are (in alphabetical order):

Dignitana, Digni Cap – refrigerated cooling system
Paxman – refrigerated cooling system
Penguin Cold Caps – manual system gel cap

In the UK these three scalp cooling manufacturers provide scalp cooling systems to the NHS, private hospitals and to home health care service providers.

At the time of writing, Paxman are the UK’s leading supplier with 1000+ systems available.

Globally the use of scalp cooling is growing.  Within the USA both Dignitana (Digni Cap) and Paxman have received FDA approval.

How effective is scalp cooling?

Firstly, it is fair to say that the vast majority of people should be prepared for some degree of hair loss. It is best to be prepared for more hair falling out then usual during the scalp cooling treatment regime.  In other words some hair loss is to be expected. Hair loss and opinions of hair loss varies from person to person.

Measuring the outcome of how successful scalp cooling may be has several different approaches and several factors. Here we look at:

• The individual’s perspective – people who have scalp cooling
• Is scalp cooling more effective on different hair types?
• Is scalp cooling more effective with different chemotherapy drug types?

The individual’s perspective – people who have had scalp cooling

From an individual’s point of view, in terms of a person deciding to try scalp cooling, it is well worth looking at the independent view of others who have tried scalp cooling alongside experts in the field who can observe individual reactions and experiences.

At Cancer Hair Care we have worked with hundreds of women through our ‘Independent scalp cooling advisory board’. Our founder Jasmin Julia Gupta has worked supporting people through scalp cooing for over 10 years.  She says,

“One person’s idea of successful scalp cooling can be another person’s unsuccessful view. In other words an individual’s experience is unique to them. Some people lose hair but consider scalp cooling successful as they adjust their style or wear a hat over any thinning area, for others the same amount of hair thinning may result in them stopping scalp cooling and wearing wigs or other head coverings. In all the years I have supported people I always say until you try it you simply won’t know how successful it will be for you”.  Jasmin Julia Gupta – UK’s leading cancer hair care specialist.

From our work with hundreds of people (mainly women) below are some common views that we can share.

The scalp cooling process does not guarantee that your hair will be saved. People have varying views whether or not scalp cooling is successful.

Examples are:

Some people notice very little hair loss at all and maintain a full hairstyle.

Other people have a fair amount of hair fall but can manage their style with the aid of some style changes or wide hair band/accessories.

Some people retain a limited amount of hair but feel that a small amount of hair works for them. They may wear a hairpiece, wig, scarf or headwear but feel it is worthwhile continuing with scalp cooling.

Some people having tried scalp cooling decide it’s not for them. They stop at various stages of treatment.

Tip: take a look at information provided by your health care providers choice of scalp cooling manufacturer.

Is scalp cooling more effective on different hair types?

In terms of specific hair types, at the time of writing there is no conclusive evidence to suggest that one particular hair texture, style, length or volume of hair mass may be more successful then another.

However, what is important and highlighted by all scalp cooling manufacturers is to try and ensure that your hair is in a manageable style and in the best condition possible before starting treatment.

This is because you will need to treat your hair very gently for the duration of you chemotherapy and scalp cooling regime.

Is scalp cooling more effective with different chemotherapy drug types?

Recent research studies state that some types of chemotherapy drugs result in a better chance of reduced hair fall. This has to do with two main groups of chemotherapy treatment types called Anthracyclines and Taxines.

Anthracyclines are shown to be less successful than Taxines.

Taxine drugs are often reported as significantly more successful. Using a basic scalp cooling success rate measured at 50% efficacy, chemotherapy drugs in a group known as anthracyclines are deemed less successful than Taxine based drugs.

There are different brand names and chemotherapy drug types as well as chemotherapy combinations whereby a mixture of both Anthracyclines and Taxines may be given as part of a regime.

The best person to ask is your chemotherapy nurse or if you know the type of chemotherapy drug you will be having you can also ask the scalp cooling manufacturer for the latest reports.

However, these studies can’t predict how successful scalp cooling may be for you but they do give some indication as to past success rates measured in controlled groups with particular drug types.

Tip: take a look at information provided by your health care providers choice of scalp cooling manufacturer for latest’s studies.

You can contact us to find out about How we compile our information and sources used.

Are there any side effects to scalp cooling treatments?

Always check with your specific scalp cooling manufacture and health care provider for the latest information about possible side effects to scalp cooling.

Side effects associated with scalp cooling treatment:

Cold discomfort (during scalp cooling)
Headache ranging from mild to severe (during and after scalp cooling)
Weighted/heavy feeling on the head (when wearing the cap)
Forehead pain (during scalp cooling) caused by pressure and tightness of the cooling cap
Dizziness or light-headedness (during scalp cooling)
Nausea

Scalp metastases

Metastases is a term used meaning that the cancer cells can travel far from the original tumour and form new tumours when they settle and grow in a different part of the body.

For some time scalp cooling manufacturers, individuals and oncology medical professionals have questioned if there could be a connection between using scalp cooling and the possibility of scalp metastases (whereby cancer cells travel from the original tumour, e.g. breast tumour, to the scalp).  Recent studies demonstrate that there is no statistical difference in the incidence of scalp metastasis between patients using scalp cooling verses no scalp cooling.

Ask your scalp cooling manufacturer and oncology team for the latest information if you have concerns.

Health conditions whereby scalp cooling would not be compatible

Patients who are known to be, or suspected of being, affected with either of the two following conditions should not use scalp cooling and the cold cap:

Cold urticaria – an allergic reaction to cold temperature, which results in welts on the skin.

There is a risk that scalp cooling could elicit a severe anaphylactic reaction, which can be life threatening.

Cold agglutinin disease – individuals with this condition have high concentrations of circulating antibodies to red blood cells.

There is a risk that scalp cooling could cause the low-temperature binding of these antibodies to the patient’s red blood cells, potentially resulting in haemolytic anaemia.

How can I find out if my hospital/health care provider will offer scalp cooling?

Your oncologist or nurse can tell you if your health care provider offers scalp cooling.

There is now a growing number of NHS, private and home healthcare providers who can provide scalp cooling.  It’s worth considering that you may not be treated at the same location where you attend clinic or are diagnosed.

It is vital that if you wish to try scalp cooling that you request it.  It is your right to ask to be treated somewhere that can provide you with scalp cooling. Many women have reported to us that they didn’t know about scalp cooling early enough in their treatment plan and so started chemotherapy without being offered the opportunity. This usually arises in cases where the hospital trust (or provider) does not offer the service at a particular site where you are being treated.  However, you have the right to request that you are treated where scalp cooling can be offered to you.

Many women tell us that the cancer nurses are often most knowledgeable about which hospitals provide the service.

If you are being treated privately or at home you may wish to call your health care provider and discuss it with them.  Additionally, scalp cooling manufacturers can tell you who offers the service in a location near you.

How comfortable is scalp cooling?

When offering guidance about the comfort levels of scalp cooling there are several considerations.

Individual experience & managing expectations

In order to try and minimise hair loss the scalp cooling method always involves wearing a tightly fitting helmet shaped hat called a cold cap.  The cold cap will vary depending on the manufacturer in design, comfort and level of coldness that your scalp is exposed to.

With this in mind, you can expect the cold cap to feel uncomfortable in that it will be cold and firm fitting. How you, as an individual, experience that varies from person to person.

It’s also well worth knowing that there are many options available to help with comfort and wellbeing.

Your first treatment & getting through the first 20 minutes of each session

It’s well worth expecting that you very first chemotherapy treatment and scalp cooling session will be an anxious and new experience in every way.

With this in mind, by the time you have your second treatment you are likely to find that, as you know what to expect, you can be less anxious.  Anxiety reduces tolerance and means that you may find your first treatment harder to manage.

Many people tell us that after 20 minutes they get used to the cold feeling and tightness of the cold cap and feel more settled.

We have worked with hundreds of women who have experienced scalp cooling, many nurses and health care professionals and manufacturers of scalp cooling to create a guide Comfort and wellbeing for scalp cooling. In this guide you will discovers the little tips that make a big difference. From knowing that you can unplug from your machine to go to the loo, ideas of how to keep cosy, tips on subjects such as how to keep glasses on and lots more.

Patient guides – additionally look at the manufacturers patient guide for ideas.

Is it true that scalp cooling will make my total treatment time longer?

Yes.  Scalp cooling makes the total duration of your treatment experience longer. You will need to wear a cold cap before, during and after chemotherapy each session.

Time lines vary. There are different guidelines for timings depending on your chemotherapy type and different manufacturer’s guidelines. But generally you can expect cold cap wearing time to be:

Pre cooling. Before chemotherapy ‘infusion’ starts = 30 minutes (45 minutes for Afro/thick hair)

During treatment = for the entire duration of your chemotherapy infusion (it’s important to know that you can take short toilet/comfort breaks)

Post cooling. After chemotherapy infusion is complete = a minimum of 20 minutes (sometimes longer, up to 90 minutes).

Note: if you have Afro or thick hair it is well worth checking with the manufacturer for the very latest cooling time guidance.

Can I skip a session of scalp cooling?

It is not recommended that you skip a session of scalp cooling as in order for it to be as effective as possible, you need to wear a cold cap for each and every treatment.

However, at Cancer Hair Care we have helped people who have had to stop one session (normally due to other unexpected side effects to chemotherapy treatment or poor guidance on scalp cooling) to then continue with scalp cooling.

You shouldn’t feel obliged to stop scalp cooling unless for medical reasons. If for any reason you have to stop scalp cooling due to a medical reason, such as a hospital stay, then make sure you discuss with your nursing team the option to re-start scalp cooling at your next session.

Will I need to change my regular hairstyle and hair care routine?

You will need to take good care of your hair for the duration of your chemotherapy regime.  Depending on your hair type, condition and style it may mean that you need to adjust your regular regime until treatment is complete.

One important tip is to know that you do not have to cut your hair short. Many people mistake guidance and cut their hair short prior to starting scalp cooling. This is often unnecessary and in some cases is unbeneficial. This is not to say that short hair is a problem when it comes to scalp cooling but to make you aware that cutting hair short is not required.

Take a look at our guide Daily hair care –scalp cooling to get an idea of guidelines for caring for your hair.