Hi just signed up to the web site as felt the need to talk to women in the same situation for advice. I was diagnosed in Oct and have had a mastectomy of the left breast with an immediate back flap re-construction. I’m recovering well from the op although still keep having fluid build up in my back which has to be drained off every week. Due to start chemo next week and keen for advice on how to cope with hair loss.
Pauline1960
Hi Pauline,
Welcome to the forum, although i am sorry you have had to find yourself here. I lost my hair whilst on chemo as i was given the regime FEC-T. It came out about 14 days after my first cycle of chemo.
I had hair mid way down my back at diagnosis and as i knew i was going to lose it and cold cap wasnt an option i had it cut in to a cropped style. Then when it did start to come out i shaved it all off. You know when its going to come out as the scalp gets really tender… and a bit sore. Then hairs start to come and you shed…so rather than end up patchy i just got the clippers and took the whole lot off.
You can get some lovely scarves and wigs. I didnt really get on with my wig though, so i didnt bother with one and pretty much went bald. I was comfortable enough like that. Although i appreciate its not for everyone.
Also - dont think the hair comes out all at once. It doesnt. For example i didnt lose my brows and lashes until cycle 5.
I dont remember the rest of my body hair going as it was gradual but i know it all went. Even my nose hairs.
I finished chemo early August. I now have a full covering of hair on my head and have already had one ‘trim’.
I know its tough, but it does grow back. And its shortlived.
If you have any questions at all feel free to ask…i dont mind 
Rae
x
Hi Pauline and welcome to the BCC forums
In addition to the support and shared experiences you have here please feel free to call our helpliners for further support and information, our team can talk to you about the BCC ‘one to one support service’ whereby you can be put directly in touch with someone in a similar postiion to you so that you can gain more support. Lines are open 9-5 weekdays and 10-2 Sat on 0808 800 6000
The following link will take you to the BCC ‘Treatments’ webpage where you will find lots more information including the ‘Hair loss’ publication and the BCC ‘Headstrong’ service information which I hope you will find helpful over the coming months:
Take care
Lucy
thanks Lucy - I’ll give them a call as there is’nt a centre in my area. Definately need some help with hats/scaves as I dont wear them normally. Tried some on yesterday but did’nt find anything I liked so need some tips!
Thanks Rae - its good to know the symptoms to look out for as to when its going to fall out - I had’nt been told that before so at least I’ll have an idea when it will happen. I’ve decided to shave it all off too when it happens - I dont want tufts left. Went for wig fitting yesterday - not sure if I’ll get on with it as it feels very itchy but I’ll give it a go - particularly for special occassions. The way the nurses describe the process it sounds like you almost have to lock yourself away for 4 mths - is that true or are you able to get out and about during some phases of the treatment? Thanks again for the advice - Pauline
Hi Pauline,
I have my last chemo on Monday. I have been careful to avoid infection, and the only time I had to be admitted to hospital was when my PICC line became infected. I never picked up germs from anyone else (other than my family). You will be given information leaflets regarding each of your chemotherapy drugs, or you can download them from this website or the Macmillan one. These will tell you when your lowest point will be for your immunity. It’s usually during the second week. At this time, I have been especially careful, but most of the time I have just avoided places which are particularly crowded and made sure I carried lots of antibacterial gel with me.
Chemotherapy isn’t easy, but it’s probably not as bad as you think it will be - and you will cope.
Margaret
hi pauline, im just at the stage of getting a good coverage of hair back,but can so relate to you ,im a hairdresser and found it so hardr the thought of losing my hair,but as Rae has said u do get quite a tender scalp and i shaved mine off a few days before my 2nd chemo ,i chose to wear hats rather than a wig, i found to be prepared before it happens made it all more acceptable to me It was the 6th cycle that i lost my eyebrows + lashes,but its not for long,keep a positive mind + it sits better with you,tina
thank you all for your top tips and positive comments. 1 week in I have’nt lost my hair yet but am prepared with hats, scaves and hopefully a wig tomorrow! So far no horrible side effects apart from sore mouth so hopefully being sensible about when to go out will ease me through it. Boredom is the biggest obstacle at the moment but trying to keep positive.
I’m seeing lots of people on here on the FEC regime - but I’m on TAC. What’s the difference?
Hi Pauline, I too am new to this site & also have had a mastectomy on my left breast with immediate ld flap reconstruction. I am also having to have my back drained each week, the last two weeks it was twice a week & now I am only having just once a week, so it seems to be getting better.
I had 3 tumours that were oestrogen receptive & have an appointment this thursday with the Oncologist to talk about the Chemotherapy that my consultant has recommended I have.
The hair loss is also my main stumbling block for definately going ahead.
Ness
Hi Ness
All sounds very similar. My oncologist said he did’nt like doing chemo if still having fluid drained - so my surgeon put a steroid injection into my back which seems to have stemmed the flow of fluid - although I can still feel it filling up a bit but at the front this time. Still it is a lot more comfortable than it has been - so might be worth asking your consultant about this option.
Good luck with the chemo - so far I have’nt had any bad side effects apart from hair starting to go. They have to tell you all the things that could happen, but I’ve found that if I follow their advice (drink 2 ltrs of water a day, eat pineapple and clean teeth regularly) then it keeps the bad side effects at bay. Hope you get on ok
Pauline
Hi Pauline
Sorry to hear you are going through this horror. I’m due to begin chemo although don’t have a start date yet. I’m doing fec-t, which is 3 cycles of fec followed by 3 cycles of tax. Fec is made up of three drugs, flourouracil (5FU), epirubicin, and cyclophosphomide, which are all used on the same cycle. tax is a different drug, docetaxel (Taxotere) that you have on its own. Some people just have 6 cycles of fec, others, like me have 3 cycles of each. Hope this info helps. Good luck with the rest of your treatment.
pg xxx
Hi Pauline, thanks for the info regarding the steroid injection. I’ve managed a week today without going to have my back drained. Your right,the oncologist did say they don’t like to do the treatment while still having fluid drained. Im leaving the fluid as long as I can,another week if possible,my breast nurse said the fluid will naturally get re-absorbed into my body if I can do this without being in too much discomfort.
Im hoping to get my appointment through this week to have my picc line fitted.
Ness
Hi Ness - glad the fluid build up is getting better. I’ve unfortunately had a post op absyss appear which has been quite painful and has unfortunately delayed my next chemo as they cannot do it while the infection is still there. Hope your first chemo goes well.
Pauline
Hi Nessier
I too was given the option of having chemo or not and with me my main concern was losing my hair. I knew that I would be have 6 x FEC and that hair loss was a definite.
I wanted to give myself the best chance of a full recovery so opted to have the chemo and also to use the cold cap to try to preserve my hair. I am my 4 days past FEC 4 and I still have a full covering of hair with no bald spots. It has shed somewhat but nothing that a stranger would notice.
All the ladies are different. Some embrace the freedom of hair loss and accept it but in my case I didn’t want to tell anybody outside my immediate family that I had cancer and couldn’t bear the thought of having to go around with the “Cancer” look so keeping my hair has made me feel so normal when I go out. Not a soul knows what I am going through and that’s the way I like it. We are all different and see things in different ways but if you are afraid of losing your hair ask your oncologist if you can use the cold cap. Good luck with your treatment.