Hi ladies. I am 34 and have grade 3 her2- er- breast cancer. I have had a masectomy and reconstruction back at the beginning of October and now face chemo.
I lost my mum to breast cancer when I was 25. Told then not genetic but guessing it might be now but that’s another story.
I have 2 boys at primary school and I work in a year 2 class as a ta. I guess my biggest worry at the moment apart from losing fertility which I am having Zoladex to try and protect, is the hair loss. I will be having 3 cycles of FEC and then 3 of T apparently. Not seen Medical day case unit yet to find out doses. I did find out on Thursday from one of the breast care nurses that the chances of the cold cap working are minimal on this type of chemo. I have long auburn hair almost to my waist. I am really scared about hair loss scaring my kids or the ones I work with and that it will never grow back to be as long as it is.
I don’t know what to do about my hair apart from trying the cold cap and hoping I am very lucky. I am getting married in 2017 if all goes to plan and am desperate to keep my hair. Any suggestions on coping or what others have done or anything like that greatly appreciated. Right now all I seem to do is cry about it all. I am no way into my looks, hardly ever wear make up, but have never had my hair short. I could sit on it at 7. Finding it all too much right now. ?
I had 3FEC and 3T earlier this year and used the cold cap as I have always been very ‘precious’ about my hair and had spent 2 years growing it. My hair thinned and became quite ‘fragile’ but I never needed the very expensive wig I purchased. Most people said they could see no difference in my hair. One or two close friends said they could see it had thinned but didn’t think it really showed. My hairdresser reckoned I lost about 25% of my hair. The cold cap needs to be fitted well. You need to wash it once a week maximum. No heat eg: a hairdryer and only use a wide toothed comb. I used simple products to wash and condition my hair. I also slept on a silk pillowcase. The cold cap is very cold when it is first fitted - after about 10 minutes it becomes easier. I took a couple of paracetemol an hour before the cap was fitted. I think some of it is ‘luck’ whether it works or not but I followed all the advice I was given and kept most of my hair. 6 months on and I’m still losing some hair when I wash it but my hairdresser says that is normal and it is growing again too.
I hope this helps. Please PM me if I can help with any more re your hair as I don’t come on this site every day now.
it’s a very scary time, especially as you are so young and have a family and a job to take into consideration too. It is doable though. You will have some bad days but hang in there, life will get better.
Good Luck and as I say please PM me if I can help you any more. Sending love and hugs. xxx
Just worked out how to change my avatar. Top left: before Dec 2014, Top right: just after chemo May 2015, Bottom left after seeing hairdresser Jun 2015 and Bottom right is a dodgy selfie taken yesterday!
When I was told my diagnosis I didn’t cry but when they said I’d lose my hair I sobbed. I’ve had long and short hair over the years and funnily enough I came to terms with it after talking with a girl at my hairdressers that had been through the same. They didn’t have cold caps when she was going through it and lost her hair twice. It comes back. It may be slow but it comes back.
I got so mad with people when they said that to me at the beginning and you will probably hate me saying it too. hours of an ice cold hat tied really tightly to your head. The idea of having to sit in the unit any longer than I had to put me off as well. Many women have to have quite heavy duty painkillers and some even have anti anxiety medicine just to wear the cold cap.
You will probably be surprised how liberating it is not having hair. Showering is wonderful, I can get up and go to work in ten minutes (used to have to straighten my hair daily) and it helps with the hot flushes.
I wish I could post my photos on here but it won’t let me.
If you want to have a look at my blog at purpleclare.wordpress.com
most of it is funny and I started it just as I was diagnosed to keep my parents up to speed with what was happening as they live so far away.
Good luck
Clare
I understand exactly how you feel. I had really long curly hair but was advised to have my hair cut short for the cold cap to be more effective. I have a wonderful hairdresser who cut it shoulder length for me and made it less stressful. The cold cap is worth the effort as I have had it twice now and my hair is thinner but not patchy. I had my surgery at the same as you with the reconstruction and I just had my second dose of fec yesterday. I cope by looking at the end game. If you want to chat you can pm me as I will be one stage ahead and hopefully can be some help.
red-robin - by now you will have had your 1st chemo nad I hope all has gone well. Everything Pinkbaglady has said is very good advice. All I can add is don’t panic if it starts shedding - it will but that does not mean it will all fall out. Give it 3 sessions and it starts to slow down. The website cancerhaircare.co.uk is an excellent source of information and has a fab section on scalp cooling, very reassuring.
You do need the support of the nursing staff to help you through and some seem to be a bit negative BUT I think you have to give it a try.
I lost my hair 6 years ago so did not want to lose is again. Used the cold cap and like Pinkbaglady kept it, although it thinned a little (no bald patches) and 6 weeks after chemo it was almost back to normal.
Good luck and hope you managed to have a good Christmas with your boys.
Marli xx
P.S I too was a TA and was advised not to work during chemo due to the risk of infection.
Thank you ladies. I managed to have a nice time over Christmas with the boys. I am day 12 post fec 1. Seem to have a little more in the comb than normal today. Can’t find a flaming wig to match except 1 at one of the 2 places the £120 voucher vaild. It matches my colour well but is £409. Feeling really sad I can’t organise a back up as can’t afford that. Can’t find anything else anywhere close. Apparently my hair colour can only be done on natural fibres which bumps the price right up. It sucks so much. All I can do is hope that the cold cap works. It’s the ones that go on from the freezer every 30 minutes. My hair feels drier and possibly a little thinner. Trying to keep positive but with no back up it is really scary.
Will have a look at that site Marli thanks
Xx
Thanks Marli and Butterfly.
I am in West Sussex. They are really good at keeping them changed every 30 minutes.
My voucher is only vaild at Robertsons in Worthing and Trednco in Hove. Robertsons drew a complete blank and weren’t all that professional in my opinion. Trendco are the ones with only 1 wig suitable. Mahogany is too brown. Mine is more orange but not Paul Scholes carrot orange! Most people say auburn. Think of the character Anna from Frozen. That is almost the colour. It is so hard to match.
Thanks Marli. I have asked the bcn for some help. They are leaving me a form to collect tomorrow as got to go in for a flush of picc line. No community nursing space but thats another story. I don’t want to go for a different colour as with my skin tone I don’t think anything else would suit me. Also my colour isn’t able to be dyed that well so it would be incredibly obvious I was wearing a wig. Darker colours would make me look washed out. Think I may have Scottish roots somewhere with my colouring.
This grant the nurse is on about could take several weeks to come through which Inam worried would be too late seeing 2nd fec 8th Jan. All a bit of a mess hair wise for me 
Happy new year all!
I had some good news on new years eve. Inhad called the department that issues the voucher and told them my problem. I expected them to look into where else I could use it but it was better than that. She called me and said she had spoken to my contact at trendco and faxed them a new prescription order through. They have sorted it so I can have the wig that matches my unusual hair colour! I was literally speechless.
Thanks for the advice Marli. I had no idea protein helped with hair growth. If you have any others fire away. I’m all ears (well eyes as reading it!).
I bought a black folded bandana style hairband today from claires accessories. Thought might as well be fashionable rather than screaming CHEMO LOOK AT ME! Can’t stand the chemo hats. Don’t want people to know.