It’s All About the Hair

It’s All About the Hair!

In early July this year I was diagnosed with stage two breast cancer. I underwent a lumpectomy and having tested positive for the HER2 protein I have just completed 12 weekly rounds of chemotherapy kick starting a year’s course of immunotherapy (herceptin).

Having thought I was just going to need radiotherapy after my surgery, it came as a huge shock that I would have to endure Chemotherapy for three months. I’m embarrassed to say my first and lasting fear was losing my hair. I felt really guilty about this but it did really affect me. Everybody’s journey is completely different, personal and unique.

Two weeks ago today I completed my final round and I have managed to preserve my hair! I have extremely curly thick hair which, for most of my adult life, I have tamed with a blow dryer and my curls have not been seen in public that often.

I just wanted to share a few tips I picked up along the way.

Back in August I was told that it was possible I may keep my hair given the type of chemotherapy I was to receive but this could not be guaranteed. I decided to confront my fear and take control of the situation. Again, this is a very personal approach. However, within a couple of hours of learning I would most likely lose my eyebrows and eyelashes (I didn’t) and whilst on the train home, I had already arranged to have my eyebrows micro bladed and had purchased five sets of false eyelashes. Tip - if you want to get your brows done you must do this before your treatment begins. The risk of infection with a compromised immune system prevents this during treatment. Although I did not loose my eye brows I have loved my new neat look!

My next step was to book an appointment with a fantastic wigmakers in London round the back of Paddington station. I went with my husband for a consultation and had a really fun hour. I purposefully did this before I started my chemotherapy and before any possible hair loss. This way it was a less stressful experience, and I was able to choose a wig almost identical to my “blow dry “look.

Wigs are not cheap and I realised this was a bit of an investment. However, just having that beautiful wig in its box ready for use really helped me prepare for chemo. I have worn it a number of times just to make me feel more like my old self, and when quite frankly, I can’t be bothered to tame the curls! Oh and make sure if you do buy a wig you give it a name. I ran a family competition to name mine and settled on Moira. This is a bit niche, but if any of you love Schitt’s Creek, you will know the character Moira has many, many beautiful wigs which she hang on nails in their motel bedroom!

I have such huge admiration for all of the healthcare professionals who care for us. Their kindness is awe inspiring. They also know exactly how to drip feed the “difficult” information.

One of the early pieces of information I was given was that throughout my chemotherapy and beyond I would have to treat my hair completely differently. This meant only washing my hair once a week after my weekly infusion and then as best as possible, leaving it alone until the next session. As anybody who has curly hair knows, the thought of not washing my hair for that period of time was horrendous. I was convinced my hair would look like a rats nest within days.

The cold cap…. I was prepared for the worst and determined to try and see it through. Again, this is such a personal experience and I have such respect for every single one of us trying to get through this. I have watched so many posts by inspirational women, Amy Dowden and Sarah Beeny to name two. I have cried tears for them and for me.

During an assessment/information meeting prior to treatment, a wonderful chemo nurse gave me a hugely important piece of advice. She said to me regarding the cold cap “this is YOUR process, you are in control and do not be afraid to ask questions or seek clarification before you start the infusion”. I watched the information videos and on a few occasions did intervene to make sure my hair was wet enough before they placed the cap on (especially around the ears and nape of neck). Also don’t forget to take a soft hair band to place against your face where your hairline meets. Rookie mistake on my first week which left me with a rather sore and bruised forehead!

It would seem my rather thick curls acted as a barrier, and I realised I was one of the extremely lucky people not to find the cap painful. I think I have surprised many nurses over the last 12 weeks. I guess what I am trying to say is don’t be afraid, it might be ok and if it isn’t that’s absolutely fine too. As a migraine sufferer, I like nothing better than an ice cold head. I probably have a high pain threshold in that area too. On one occasion I turned up for my treatment with a headache, that cap sorted it right out!

Another tip I have is that if you do have thick hair, make sure you wear the cold cap for 45 minutes before your infusion starts. This is longer than normal, but recommended for people with very thick hair. All in all I’ve worn the cold cap for three hours plus every week.

My final tips relate to care of your hair at home. On the recommendation of my hairdresser, I am using a sulphate free shampoo and conditioner by Pureology (others available!). It was actually created by a husband for his wife going through cancer treatment. I was advised to wash my hair upside down gentling massaging the lengths and to not put much pressure on the actual scalp, definitely no scrubbing! Once towel dried and combed (this was when I could gauge how much hair I was losing and was always a little bit scary), I first put my hair in a towelling turban to dry. I then put on my secret weapon for containing curls over an entire week, a silk turban. I sleep in one of these every night and absolutely swear by them. Having been sceptical, I was amazed that my curls stay fairly neat and tangle free for seven days! I have not been using any products in my hair, but this tip alone has meant my hair has been manageable throughout my treatment. I have been advised to treat my hair the same way for the next 3 to 4 months whilst the chemo gradually leaves my body. That means still no blow drying, guess Moira will be busy over Christmas!

Final message - embrace those curls. I feel strangely liberated and free from all those hours of blow drying, fretting about the weather and the humidity. Making sure I took a hat with me whenever I went out just in case. I have two grown up daughters with the most gorgeous curls. It’s now time I joined them!

Wherever you are in your cancer journey, I send you love, hope and courage. I hope some of this helps you even if just to know you are not alone.
Sent from my iPhone

12 Likes

:heart:thank you for sharing all this very helpful information and your personal experience with everyone :heart: wishing you big :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

4 Likes

Thank you so much for this information. I am HER2 positive too and have oncology appt next week. You have given me some hope amongst all my despair. I have very thick hair too. I’m having a horrible time, fearing the worst. Trying to distract myself and be positive but its sooo hard! How large was your tumour? I was expecting chemo for 6 months so 3 months would be a bonus… Mine was 8mm in amongst high grade DCIS. Grade 2 but no stage? Not in sentinel lymph node. Wishing you all the best going forward, you sound like a very positive person.

3 Likes

I’m so sorry. You are feeling the same way we all feel, scared, frightened and desperately trying to be positive. I found understanding the information I was given so important. Then just hang onto what your team tell you about your case. Try not to go down the Google rabbit hole. My tumour was 15mm DCIS grade 2 as well. Nothing in lymph. Although I tested HER2 positive, I did have my lumpectomy first and then the chemo. My surgeon made it clear the chemo was only as part of my herceptin treatment, not for my cancer. She explained herceptin is only licensed in UK (and USA) with an initial 12 week course of chemo. I had paxitaxol chemo. I have just had my radiotherapy which was only five consecutive sessions in one week. Very different feel to the chemo, very quick, in and out in 15 mins. Also strange the side effects are cumulative so it is only now 8 days later I am starting to feel a bit sore and tired. With Christmas upon us and the year nearly over I cannot believe this new normal has been going on for 6 months. You will find an inner strength, just take it a day at a time and hang onto those happy moments that do come along. Best wishes 🩷

5 Likes

Thank you for your reply. Such a worrying time… Oncologist tomorrow so will know more then. Best wishes to you and a peaceful Christmas :christmas_tree: xx

2 Likes

My hair is very similar to yours and I’m so thankful I read this before my first cold cap on Friday. I weirdly quite liked the feeling, the nurse said I’m the first person to ever say that!

I’m deffo a type curl 3a and I’m not sure it was fitted properly even though she assured me it was so manifesting she was right and I was wrong!

Thanks for all the after care tips, and if I need a wig I’ll be hitting you up for the Paddington shop!

Merry Christmas to you and yours x

2 Likes

I’m so glad you were ok with the cap. It doesn’t need to be really tight, just touching your head all over. Wishing you a very Happy Christmas too 🩷:christmas_tree::santa:t2:

1 Like

Thank you for sharing your story, it’s really important to get out the positive side of cold capping.

I am HER2+ and had Paclitaxel for 12 weeks with Herceptin. I cold capped and kept most of my hair. Just a bit of shedding and two small patches above the ears which I think was due to putting my glasses under the cold cap instead of over. I found out from www.cancerhaircare.co.uk that I should wear the glasses over the cap instead of the nurses on the chemo ward who watched me squeeze my glasses under!

I had a short bob which I cut into a pixie as the cancer centre had suggested a cut would be best. In hindsight I probably didn’t need to. Paxman suggest it only if you have very long hair as the weight can pull at the roots.

I have quite a lot of hair with some curl and always kept in good condition so I think that helped.

I hear so many saying I don’t want brain freeze which I didn’t get. The chemotherapy drugs affected my brain more! Yes you have to be in the chair longer with a cold cap but it is worth it to preserve your hair and some studies have suggested even if you loose some hair it can help with re growth.

My oncologist said I would lose my hair if I didn’t cold cap and one of the last nurses I saw suggested very few lost their hair with Paclitaxel. I mentioned this in clinic and they were surprised by the nurse’s comment as Taxanes nearly always take your hair. So even healthcare workers can give mixed messages. I think the NHS want to promote cold capping but know it takes longer and there is a huge need for chemo chairs.
I would recommend also checking out www.coldcap.com a Paxman website and there is a link to check your drug regime to success rate regarding hair loss.

Take care :smiling_face_with_three_hearts:

1 Like

I was so confused before my chemotherapy start that I wanted to share my experience and prep with others if case someone finds it helpful.

Just a bit of background about me and my approach, I’m a professional project manager and managing my cancer as a project helped me to keep distance from it and just navigate it one step at a time.

In preparation for the chemo and cold cap I bought the following:

  • cosy electric blanket (best buy ever, keeps me so warm and comfortable that I usually doze off while wearing a cold cap!)

  • house socks (they are very thick and I’m ok to go to the toilet during the treatment wearing just them)

  • north face jacket with a zip (got it at 50% discount, it’s really cosy)

  • sports top underneath (I don’t need a bra with my cup size)

  • comfortable underwear from Uniqlo

  • comfortable joggers

  • natural conditioner (Aveeno in my case) to put underneath the cold cap

  • hair band to put underneath the cold cap (I bought a thin one but perhaps a sporty thick hair band would actually work better)

  • bandana / hair cover to put on when going home with wet hair

I also bought a Kindle so that I always have something to read without bringing my library with me.

I hope it helps!

I have been tolerating the cold cap surprisingly well and it came as a bit of surprise after all the horror stories I’ve heard, so glad to hear that others had a positive experience too! I grew up in country with really cold winters and it actually reminds me of home.

6 Likes