Chemotherapy Hair Loss Study
Sinead Power pictured with Dr. Mario E. Lacouture at Memorial Sloan Kettering Cancer Center, April 2011. Sinead's trip was sponsored by Bayer Healthcare and the Irish Association for Nurses in Oncology. Dr Lacouture is a dermatologist interested in chemotherapy induced hair loss.
Sinead Power is a nurse researcher from the Catherine McAuley School of Nursing and Midwifery, University College Cork. She is currently undertaking her PhD. and is particularly interested in examining the effects of chemotherapy induced hair loss on the self-concept of individuals with primary cancer. In today’s guest post, Sinead tells us what led to her interest in this area of research, and how you can help with her survey.
My interest in this area has emerged mainly from my work as an oncology nurse for many years. As a woman myself, I was always struck by patients’ reaction to the news that they would lose their hair. Through my clinical work and my previous research I have also discovered that some healthcare professionals tend to under-estimate the impact of chemotherapy induced hair loss on patients. This mainly comes from the perception that because hair loss is temporary it will be somehow less traumatic for patients. However, this is often not the case, hair looks very different for many patients once it comes back. It is often a different colour and texture as before. The change in physical appearance resulting from hair loss can affect may aspects of an individual’s life including their interactions with those inside and outside of their family circle. Hair loss may also impact on how an individual feels psychologically. Thus, I feel that this is an important area to research. The study has been open to patients since January 2011 and to date, I have 219 responses. A big thank you to all who have taken part. The study questionnaire is accessible via an on-line link
http://www.surveymonkey.com/s/hairlossstudysineadpower
This questionnaire takes approximately 15 minutes to complete, and the feedback on it’s ease of use has been very positive to date. The study is also open to males and 12 have taken the time to complete the questionnaire so far.
Thus, if you have experienced hair loss resulting from chemotherapy, I invite you to take part in this study.
The study questionnaire is also available via Facebook.
Please have a look at this page, you are more than welcome to become a “friend” to the study. I have interacted with some amazing people from all over the world since the page opened in January. I hope to use this page to relay information to you all relating to the study’s progress. Please do not hesitate to contact me should you have any questions relating to the study or if you would like to see a copy of my previous publications relating to chemotherapy induced hair loss sinead.power@ucc.ie
Thanks to Marie Ennis O’Connor (Journeying Beyond Breast Cancer) for inviting me to be a guest blogger and for supporting the study since the beginning.
Related Post: Hair Today..Gone Tommorrow
I never thought of how important my hair was to me until I lost it during chemotherapy. It really upset me more than I realised it would.
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Like Peggy, I never realised until I lost my own hair during treatment, how often it helps define a sense of self, a sense of identity. But then when I lost it, it felt in a way liberating – somehow it revealed the real me underneath the manicured tresses!
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You know everyone tells you to shave your head preemptively. To go ahead and do it before it starts falling out and I thought, no, not me, that’s not going to be me, because some chemotherapy patients don’t lose their hair – well boy was I wrong. I want to tell anyone who is about to undergo chemo to take matters into your hands and take control before the chemo does. Good Luck!
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A very interesting study – hair loss was a really tough part of the whole experience for me, and one which I found difficult to express. With all the other nasty stuff associated with treatment and diagnosis, it it difficult to convey just how upsetting it is to deal with hair loss and how it makes you feel. It is also such a visible signal of cancer treatment. I would be very interested to hear the results of the survey.
Thanks to Sinead and Marie for bringing this forward
P 🙂
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Hi Philippa..welcome back from your holidays – great to have you here again and thanks for the comment.
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I felt so devastated when I lost my hair too – a sense of loss of my personality, my identity. But friends helped me realise it is my inner soul that makes me who I am today, not my hair.
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The HARDEST day was losing my hair. It started coming out the day after my 2nd treatment. So I had my head shaved. I cried all day…
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My best friend sent me a T-Shirt that says “With a Body Like This Who Needs Hair?” I wore it with pride – yes, even with my wonky boobs – I still celebrate my body – attitude is everything!
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Charlotte – what a great attitude you have!!!
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A lovely lady who was a volunteer for “Headstrong”, (Breast Cancer Care’s scheme which provides free advice on how to wear scarves after hair loss,) had also advised me to get my hair shaved off before it fell out. I’ll always remember her experience – she said she’d been having dinner one night and her hair just started to fall out onto her plate. The thought of this happening to me was enough to ensure that I went for the shaving option! To be honest, I found it quite liberating in a way – I think I thought “If I can do this, I can do anything” – but what I found more upsetting was the loss of my eyelashes. I’ve always worn mascara and suddenly there was nothing there – it also made me look ill, which I hated.
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Thanks so much Palma for your comment. I wish someone had told me to shave off my hair at the time – it was very distressing to have it come out in clumps in my hand while I was in the shower. I will never forget that feeling!
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Ladies,
I take my hat off to you all! I struggle to imagine would I be affected if I lost my hair suddenly. I will never know that feeling unless it actually happens to me.
I salute you all in your decisions to be proactive about your hair loss, and your mental attitude. Charlotte, you are a star!
Marie, as always, you are a pillar of support to these wonderful women and men. I am blessed to know you.
Sinead, you are a gem. I am blessed to have you as part of my family. You are doing fantastic work in this area, and also helping to create better awareness to the rest of the world, so we can understand better.
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Thanks Elaine..I didn’t know the connection between you and Sinead before now 🙂
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Thank you to all of you for your wonderful comments…Elaine, Thanks for letting me know about marie’s Blog. As you can see, she has been a wonderful support to me so farXX
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I participated in a similar study done by Linda S. Heuser at Willamette University in Salem Oregon – lheuser@willamette.edu – you might be interested in contacting her to compare results. She also did a study on women having reconstruction.
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Hi, thanks so much for dropping by and for letting us know about these studies.
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I have mainly felt angry about it. I’d got used to being “invisible”, as women are when they are middle aged and look “ordinary”. I felt self-conscious without hair, because people DO look, just because you look different. An eye-opening experience, but I’d rather have kept my eyes shut, ta very much!
That said, I went commando because it was more comfortable. If people have a problem with it, then it’s THEIR problem, not mine.
The best responses were from little kids. Laughed like a loon in the supermarket when a little girl of about 3 said in a very clear voice, “look at that lady’s hair, mummy!” I have never seen a trolley shoved past the yoghurts at such speed, she should have got a ticket!
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Hi Jenny, thanks for your comment – and it’s true as you said, it’s their problem. I didn’t have the courage to go commando like you – I wore headscarves, but I wish I did have your courage – there is something very beautiful about courage like that.
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This is such an important study. My hair loss eight years ago was traumatic and life-changing. I so fully know that my identity is not wrapped up in the image in shampoo commercials. I don’t aspire to have that kind of hair and don’t care, either. Even post-Arimidex, which thins the hair, my hair is still not what it was before chemo. I took your survey a while back and loved the questions. Thanks for posting.
XOXO,
Jan
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Thanks for your support Jan for this study and for your comment.
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Thanks for your support of this study Jan x
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Hi Marie,
Yes this is a very interesting study and love the comments. While the hair loss during chemo was not bad (I prepared..bought a wig that I liked got my hair cut really short before it fell out and actually enjoyed not have to worry about shampoo, conditioner, hair dryer etc) I am having a tough time dealing with it now that it is growing back and it is curly and very thin. Femera is also helping keep my hair thin. So I have still kept my wig as my hair is growing back. But I guess if that is the worse thing in life I have it made huh 🙂
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It is so good to see you here again Luann and congratulations on your cancerversary!
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Ladies , Thank you all so much for your contributions. Please feel free to contact me if you need any further information on the study or a copy of my previous publications regarding this important area of research. The srudy is also open to males (12 have taken part so far).
Sinead.power@ucc.ie
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i appreciate the idea you have shared here. i had hair loss from chemo and radiation so not sure how relevant my experience will be but wanted to let you know the hair loss from the radiated area is the slowest growing back.
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Thank you Rena for sharing your hair loss experience.
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Well done Sinead on completing this interesting study.
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Hello doc i am Anuj verma, currently doing the B.tech in Bioinformatics, and doing project on the hair fall problem and its causes can you provide me some information about your finding and also can you tell me the some parameter that cause the hair problem. any kind of information is very usefull to me so please send me a mail to my mail id:-anuj.upic@gmail.com.
Thanking you
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Yes, I know what you mean about all that hair loss. I never could figure out why my nose was constantly “running” and then I realized all those little nose hairs were gone too! They aren’t all back yet either and I’m still waiting for my eye lashes to return. And my brows to thicken. And the hair on my head to look decent. Well, you get the picture! Hair is just hair.
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You’ve really helped me udrnetsand the issues. Thanks.
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