I have just had my second dose of chemo fec and i have lost my hair.I was told December I had breast cancer and by January I had by breast removed and started chemo. All of this i could cope with but loosing myhair has really hit home. I feel more bothered that i have lost my hair than my breast. I went to a house in Rugby with my daughter a she wanted to buy me a head scarf and was horrified by the service.I felt as if I was standing there naked and was being stared at like a freak. Does anyone know where I can go to get some headwear that people are more understanding. You might think its not a big deal to loose your hair as I cannot understand why it upsets me so much I just cry.
I totally understand where you are coming from, I am due to start my chemo on 23 Mar and the whole thought of losing my hair horrifies me and freaks me out. I can’t help with the practical side of it but just wanted you to know I understand.
Jo
Dear Suzie b,
While you’re waiting for replies from your fellow forum users I thought it might be helpful to post a link to the BCC publication ‘Breast Cancer and Hair Loss:
breastcancercare.org.uk/upload/pdf/Breast_cancer_and_hair_loss_ERJ.pdf
I am also attaching a link to information on HeadStrong, a BCC hair loss advisory service, which is available in certain locations across the UK:
breastcancercare.org.uk/about-us/our-services/local-support/headstrong/
Please do also remember that the BCC Helpline is available if you need information and/or support tel 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
With best wishes,
Anna, BCC Facilitator
Hi Susie b I think lots of us have found it really difficult to deal with hair loss - when I went to enquire about wig services at the hospital I just dissolved into tears! But your chemotherapy team are probably a good place to start to point you in the direction of good local services. There are also some online companies worth looking at for headwear e.g. Bandana.co.uk if you would feel more comfortable with that. It just seems at first like one step too many to deal with I think, BUT it is temporary! It WILL grow back! try taking a look at wigs - I thought I would hate them but was so impressed when I saw what was on offer and couldn’t have had better service or consideration from the wig consultant. Sending you a hug and hope you find something that works for you soon. Sue x
I have just started Chemo, 1st one 10 days ago. I decided to try cold cap and at the moment i still have my hair. My Mac nurse sent me to a local hairdresser who was very nice to sort out a wig( why do they call it that, it sounds very threatening) Well it is not as frightening as i thought and i am confident that if i still lose my hair i have a nice new hair do ready to pop on. i was shown some scarves, caps etc which i thought were expensive,starting at £12 each. I hope i wont loose my hair but had it cut before my op from half way down my back for most of my life, to short. i have since purchased some toweling hair wraps for a £1, i am going to use remanants picked up at the market for a £1 a piece, which i am going to sew onto the the reverse side, so i can wear them day or night. i bought some of these caps that are in fashion in a sale for £1 each to pop on if it is windy etc, cos i am scared my hair might blow away. And finally, i found some baby hats to wear in bed @ Tesco 2 hats for £1.79 there will be other baby outlets but we dont have any where i live. Hope some of this helps. I watched GOK, glad he’s not my son but he is a lovely guy and some great ideas, he was doing wigs, they are so high fashion at the moment, so girls don’t despair, have fun and have any colour you want. i found a site on Thursday late night ordered 2 long new hair styles, i thought long was good because you can have it cut to any style you want. i am lucky i have 2 grand daughters training to be hairdressers, so they can have fun styling them. There are also now wigs that can be styled with heat, so long as you don’t give them too much and washed and dryed with a hair dryer. idont know if we are allowed to name suppliers on here but all their wigs are reduced to around 35-40 and ordered late Thurs night delivered special del by Royal Mail this Saturday am. I bought some wig caps which i found are very similar to pop socks but not as long, if you get me, mind i have a small head so if you are tall then the same size you buy in nylon stocking type socks will probably fit your head. Try the ones you have worn first, could be with a wash they will do both jobs. I was also told you do not have to purchase shampoo at £10 a shout, baby shampoo is just as good, don’t over wash but don’t leave your wig till it looks like it needs washing. Don’t know if it is allowed on here, but watch GOK and that prog about hairdressing on TV and look at wig store all one word of course and dot com, they are in Yorkshire.
Now can anyone help me, since my treatment i cannot get rid of the contents of my stomach and it is making me feel so ill. Tried everything loads of fruit, juice things i cant normally eat like bananas, choc, eggs, as well as syrup of igs and senecot and now movicol and cans of guiness. Any ideas will be welcome. Lastly has anyone got a nice name for a wig, so we wont freak out when the word is mentioned I was watching a prog the other day when someone called her breasts, ladies now that sounds nice, especially when you have 1 and half. Hope someone finds this helpful
I have just posted something that might be helpful but it is not up yet, Watch GOK, and being naked or something like that Gok again and there is a hairdressing prog on at the moment. I have also just bought some really nice long wigs which i am going to have styled to suit me from online, very fast del, ordered late Thurs night, arrived this Sat am Spec Del by Royal Mail. wigstore.com from yorkshire. If they take this website off i am on face book Wigs are all the fashion at the moment. i don’t understand why you were naked to get a wig dont go there again, thats not right. You need building up not demoralising, put your makeup on and your nicest clothes. Tell yourself what i have told myself all my life “I am the best looking woman in the room” cos i have never been a looker, got awful skin and legs that have to wear stockings. Go for it!! let me know how you get on.
sent you a reply, but if it is any comfort the hairdresser i saw told me my hair was too dark for my skin, funny that is the color god gave me dark brown/black had it all my life. Just hope these people dont have to go where we are at.
Quick reply - annabandana.co.uk have a nice selection that’s very reasonably priced and very quick. I ordered yesterday and my order’s already been despatched so should be here on Monday.
Hi Suzie, like you I have found losing my hair in a way worse than the dx.I shaved my hair off on wednesday, as it was coming out fast!!Ive taken down the mirrors in the house & didnt go out for two days. Today I put my wig on & faced the world again, it is hard, but I keep saying to myself it will come back & its a small price to pay to make sure the cancer never comes back!!!I found a really good wig compant called simplywigs.com on line & the wigs are amazing, treated myself to one to wear on special occasions instead of my free nhs 1.Im sure with time we will all feel better about this particular se, chin up smile on 
lesley x
i’m due to start chemo soon (mid april) and although i dont like the idea of losing my hair as i realise it will grow back but will take a while, but was going to ask how fast it wil fall out?
Hi Suzie. I wonder if you got all the advice and help you should early on, given that you had the extra bad luck of diagnosis and surgery over the bad weather and the Christmas period.
Even though I have a baldie picture here now, it still doesn’t quite feel like me. Online might be the easiest way, since you don’t have to go out. I already had lots of scarves and some of them are suitable–large enough and not too slippery–and if anyone wants to give you a present, you could ask for pretty cotton scarves, either big squares or the long ones. I’ve just ordered some more to cheer myself up. Some people find caps or hats easier. A kind friend knitted some for me.
You are also entitled to a wig or to a voucher towards a wig–different trusts have different ways of doing this. I strongly recommend going to a specialist wig fitter. Your treatment centre should be able to give you a list. It’s probably best not to go to a place full of young things looking for hair glamour! A specialist fitter will help you find the right wig and will be much more sensitive to the issues. I have a nice enough wig, but I don’t wear it often.
Mine fell out gradually most of the time, which made it easier. When it turned really patchy I cut the remained as short as I could and then shaved my head. I tend to wear a scarf or cotton stocking cap most of the time at home simply because we keep our house at the cool end of comfortable and I find that a bit cold for a bald head. The stocking caps are practical but ugly, to be honest.
The one time I was out in public with a bald head was with someone else from the forums–she’s braver than I am and I thought I would keep her company–I was surprised at how few people did look. On the other hand, they were probably too busy thinking about their shopping as they walked past. In other contexts I know people can be very insensitive.
I’m not pretending that it’s easy, but ask about a wig, see a specialist fitter who will help you find something reasonably close to your style and colour, and start your retail therapy online. Check out the sites for the places you normally shop, if they do hats or scarves.
Best wishes
Cheryl
Jo, I can only tell you what others have recommended that was helpful for me. You can ask about something called a cold cap which helps some people to retain at least some hair. It doesn’t suit everyone, and isn’t recommended for everyone.
Some people find that being pro-active helps. In other words, you don’t just wait for it to fall out. If you have long hair, consider having it cut in advance and sent to a charity that makes wigs for children–I think it’s called Little Princesses. At least that makes it a worthwhile sacrifice for some people.
Mine wasn’t long enough for anything like that, but I went to the hairdressers a couple of weeks before chemo started and had a short haircut. I asked for just short all over, but the hairdresser suggested a 60s Twiggy style which I’d last worn in the 60s, which at least cheered me up. The swoopy fringe took a lot of work and hairspray, so after a week or so I just trimmed that short.
Another very useful tip is to get your voucher or prescription for a wig early and see a specialist fitter while your still have at least some of your own hair. If you have a very distinctive style, even before cutting it short. The fitter will help you chose something close to your own colour, length and style.
While some people have a very dramatic loss-looking down in the shower and seeing most of their hair clogging the drain or finding handfuls on the pillow in the morning–I think most start out with thinning. This typically starts a couple of weeks after the first treatment, but it varies a lot. This is more of a nuisance than anything else, because it’s the same as when a cat or dog is shedding, and there is hair everywhere. I started to wear a cotton stocking cap at night just to catch what fell out and this is where shorter hair becomes easier. Your hair might just go on thinning gradually, but often you develop first bald patches and then you become bald with hair patches. Somewhere in this process, many people decide to shave their heads. Again, taking this active step helps many people. There are accounts of people getting partners or their kids to help them do this and making it a bit of a game.
Facial and body hair is also different for everyone–it may be thinning or sudden, noticeable or not.
I shaved my head (electric woman’s razor, nothing fancy) when I decided that bald was better than patchy, and because it’s winter I’ve mostly worn cotton caps or scarves since. I’ve got a suede head rather than a skin head 4 treatments on, and I find my wig can be a bit itchy as a result, so that only comes out for social reasons. But some people get used to their wigs quickly and put them on as they would brush their hair.
Yesterday, with lovely sunshine warming the house, was the first day I went ‘commando’ for most of a day, and I enjoyed not having my head covered. You’ll find for yourself whether it’s better to cover up for practical or self-image reasons, or whether in warmer weather at least, you can get used to that different woman looking at you out of the mirror. That’s not a trivial matter, by the way. Being turned into a different person, even if we hope it’s temporary, doesn’t help us to cope with everything.
Hi susan_m and welcome to the forums
I am posting a link to the BCC publication about hair loss which you may find helpful:
Our helpline is open 9-5 weekdays and 9-2 Sat and our team are here to offer you further supoort and information.
Take care
Lucy
HI Susie
I know exactly how you are feeling. When I was diagnosed the only thing I focused on was ‘OMG I’m going to lose my hair’, so I know how scared you are. Once my hair had gone, it was another ‘tick’ off my ‘getting on and over it’ list. Mine fell out 21 days after my first FEC and I was relieved, yes relieved, I could not believe in a minute that I would feel like that. It had started falling out beforehand and once I’d found a hair in a chocolate cake I’d made I thought - right off it comes. In the shower it just all fell out apart from a few wispy bits which I cut off and I was left with soft downy hair which I still have (I’ve got one more chemo to go, I’ve had 5). I haven’t been able to shave it and quite like the ‘woolley’ feel of my head. I still have my eyebrows and eyelashes, hairs under one arm (weird), hairs on my arms and stubbly bits on my legs (typical - why doesn’t it start from the bottom and work upwards?).
I do wear a wig and was lucky to find a lovely lady who came to my house with samples for me to try on. I have to say, and you probably won’t believe me at the mo!, that it does look great. I work in a secondary school with loads of teenagers and they have not given me a second glance. I haven’t found it itchy or uncomfortable. I don’t wear it around the house as I prefer my hat from surburban turban as it’s really comfy and gives some ‘height’ to my head and would you believe I said the other day to my OH that if it wasn’t for my 2 image-conscious teenage daughters I probably wouldn’t wear a wig at all when I was out and just wear hats - now that is amazing from my first reaction months ago!
Don’t be frightened of it. You will be able to cope with this, it will grow again and be gorgeous. In the words of my eldest daughter ‘oh for god’s sake mum, keep your hair on (yeah ha ha), there is a girl at my school who is 15 and got alopecia and wears a wig all the time, she doesn’t know if her hair will grow back at all’. Had to eat humble pie here … she’s right but it’s hard I know when it’s you.
Keep us posted, I’ll let you know how my fluffy head progresses once I’ve finished chemo.
Wishing you all the very best
Rachelx
Hi Susie,
Just a quick reply- I went along to ‘headstrong’- you should be able to find them on this site as they are a BCC service or if not, phone the BCC helpline. The ladies I saw at ‘Headstrong’ were brillaint. I tried on loads of different styles and found what suited me best. I found a couple of sites- Annabandana.co.uk (lots of choice and really cheap) and Theindiashop.co.uk (for traditional tie scarves made of cotton which are really comfortable.
My hair started to fall out about 16 days after FEC 1. I noticed a pony tail headache a few days before and my BCN said this was normal and a sign that my hair would start to fall out. I held on to it for another 5 days but then got so fed up with it, I shaved it off (a number 1 with hair clippers). I felt quite liberated when I shaved it off and felt like I had gained a bit of control.
Lisa x
Hi Susie and Jo,
I’ve hopped into this one as I thought both your post were about hair loss and just wanted to tell you about my experience…
I did “chemo first” and finished in December last year and had a mastectomy seven weeks ago. To me losing my breast has been far harder to deal with than losing my hair; a part of me has gone and will never grow back, your hair will and mine is, so I know it isn’t easy but try to look on the positive side.
I have a wig but never took to it; it’s how I felt and not how I looked that made me ditch it. It looked fantastic and you really couldn’t tell, but I much prefer scarves - and you can colour co-ordinate them with your outfits and I wear dangly earings with mine too!
When I went for my wig I chose a shop that is being run by a lady who has been through this herself so you might want to ask what experience they have before you book a session. I avoided the ones with hairdressers at the same entrance and reception, don’t want to go and book in for your wig session alongside a cut and blow do you! You will get more confident; I did but it’s just that you are at a very delicate stage right now and I feel for you but believe me you will get through.
I bought buffs for around the house (and under my crash helmet) and you can get these at camping shops etc, or online. Bohemia fashions were very quick at delivery too, and there are lots of scarves in the shops right now, just avoid the silky ones as they slide off your head.
Hope this helps, Dee
Dee - I love your profile pic! Made me giggle.
Rachel
Thanks Rachel, I smiled when I saw it too; and seeing as Spring was coming and we had tits in the garden I thought hmm… couldn’t resist lol x
Dee49
I had my op in January, there was a young woman on the ward who had her second breast reconstructed the same day, 2 days later before she left the hospital she put on a proper bra and was so delighted she showed me and another lady who was going through the process, what they were like. All i can say if all the ladies who have to go through the trauma of having a mascectomy/double, eventually get a reconstruction like that will be very happy. try and keep your spirits up. I have lost half of one breast( i now call them, mother and child)would rather have had the whole breast removed, and if surgeons do a recon as good as that, then i would have the best bust ever. Good Luck
suzie b
Sorry i miss read your post, i thought you said you were standing there naked, OMG I feel so stupid! maybe one day you will see the funny side to my mistake. Good Luck