Permanent hair loss after radiotherapy to scalp...

FormerMember
FormerMember
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I have got permanent hair loss on my head/scalp, and even almost 17 years after I had the treatment, I am still annoyed at it being gone, and not as confident as I was before the treatment.  I have tried wigs/hairpieces but they are blindly obvious and I don't really like them much.

I cry when I see photos of myself before the chemo and radiotherapy treatment, because I just want my hair to be back, so I can at least do something with it, style it or whatever.  People say they understand, but they have no idea what it is like.

I say to them, 'you can shave your hair off, but yours will grow back. So don't go telling me that you understand!'.

I get so downhearted from my lack of hair, especially when someone has taken a photo, and I can see the full extent of the loss.

I just wish there was a way to restore it............. :(

  • FormerMember
    FormerMember

    I DO understand, I lost the front half of my head of hair from the crown forward and from ear to ear after RT, resembling a cross between a female Max Wall & Andy from Little Britain.

    6 weeks later it started to grow and I was so excited as I had been warned it could be permanent but at the time you are just clinging to hope of prolonging your life.  However, my brain tumour was right frontal lobe and the area that took the most radiation has NOT regrown properly, infact its bald with a few hairs (Homer Simpson style) and the hair around it is taking forever to grow.....I will be able to have a combover of sorts, my I am wondering if I will actually live long enough to see the day as its now 2 yrs post RT!

    So, as you can see from my profile picture, I have to wear wide fabric headbands to cover it.  Xmas day I went 'naked' when family came round but I had half a can of hairspray on it to keep all the strategically brushed hair in place!  I won't go out like it in case the wind uncovers my sparse spot!

    I too have lost a LOT of confidence and the patch is probably the size of a mini-cd.  I hate looking in the mirror Sad and my kids & husband tell me it looks fine - which is great, but I know its not entirely true!

  • FormerMember
    FormerMember in reply to FormerMember
    I can't begin to imagine how hard that is - or maybe I can as I found even the temporary loss very very difficult to deal with. I don't know how much if any hair you have but is a weave a possible answer? I considered it but ended up with enough hair to do a haircut as I used a cold cap. There is a company in London that looks terribly expensie but does amazing things. It isn't usually affordable unless you are prepared to be a model and have before and after photo's done etc. They do say you need at least a few patches of hair for it to work. Also, I thought my wig looked dreadful and artificial but I got more compliments from complete strangers when I was wearing it than I have ever had before - and I liked my hair before. I used to go into a panic when people tried to touch it or run their hands through it in case it came off and ended up being quite abrupt to some. I suspect your wig looks fine and most people wouldn't realise but I also guess it will always feel like a wig and its the nightime and bathtime bits that I found hard = my hair went through a very patchy period and I felt like an old woman - not a terribly sexy feeling and certainly not a confidence booster. Sorry can't really be of much use. Tess x
  • FormerMember
    FormerMember

    I just wanted to say, if I could, I would give you a big hug.  I lost all my hair but mine grew back.  I have to keep it very short as I have lymphodaema and cannot use my left arm because of the swelling.  I do feel very old at times (51 very soon!) and very conscious that I look different from the old me who always tried to look my best with make-up/clothes/hair done nicely.  Hey ho, cancer really does suck, but I'm here and, sometimes, when I look at the most simple things like the sun shining, the rain falling on my face, my daughter looking beautiful on her night out, my dog looking for me to give him another walk, my husband asking what's for dinner, well, what would they do without me?  They all love me I know and it just has to be enough for today.   I hope, as tessa said, you are able to find some sort of solution to giving yourself some hair and I wish you peace with yourself.  Ann x

  • FormerMember
    FormerMember in reply to FormerMember

    Also, being a man seems to make a lot of people think that, 'Oh, he can tale, he's a man!'

    That is so untrue.  Like I said before, looking in the mirror gives me a false sense of security, because I cannot see the full extent of my hair loss, so when I see photos taken of me, I can see how bad it really is. Also found out something interesting last week.  I have an annual blood test at my hospital to check I am ok still.  A couple of years ago, I had a seizure whilst I was at home, luckily there were other people here.

    So last week when I went to the hospital, I talked again to the consulant, and he had seen the scans I had had done from Neurology, and the conclusions from those scans, both from Neurology and the consultant, is that the radiotherapy did even more harm.

    The scans showed that the treatment had slightly scarred my brain, and I was told that this was reason behind the seizure I had. So now, I have to medication to prevent any further seizures.

    At the time with the radiotherapy, I was told it was a 'precautionary' measure to prevent the possibilty of the leukaemia getting into my nervous system. The choice was mine. I was against it, because of going through more treatment and possibly losing my hair again, maybe for good.

    But as per normal, the staff 'cohearse' you into having the treatment, so your decision isn't really your decision.

    So I have this other depressing condition to put with as well as the hair loss.

    The hair loss as I have said before is almost complete on the top of head, mostly gone on the upper part of the back of my head, and all of the rest on my is not very dense, and grows extremely slowly.

    On my face the hair loss is my eyebrows, not completely, but comparing to what they were, they hardly show when a photo is taken.

    People say I am being vain in wanting my hair back, but it is not vanity, I just want my hair back so it can be styled, keep my head warm, can grow old with me, and change and thin naturally.

    Until that happens, I will not really be able to be very positive about it.

  • FormerMember
    FormerMember in reply to FormerMember

    Oops, a spelling error in the quotes in the previous post.

    It should be 'Oh, he can take it, he's a man'

  • FormerMember
    FormerMember in reply to FormerMember

    I am so depressed and lacking in confidence due to my hair not growing back on almost the whole of the top of my head.  I loathe to have a wig or wigs because you would have to more than one if you wanted to change your hair style.

    I just want my own bloody hair back.....there has to be some way!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • FormerMember
    FormerMember in reply to FormerMember

    There, look at my avatar picture in these posts! See how bad my hair loss is, and how it affects my appearance and confidence.

    A stupid 'comb-over' from the back of my head to the front....

    Yeah, go ahead and laugh.........I can't get any lower than I already feel....

    GIVE ME MY HAIR BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • FormerMember
    FormerMember in reply to FormerMember

    Strandy

    I do feel so sorry for you, I can imagine how you feel I had radio theraphy to round my left ear I have had so many opration round my ear since lots of stitches in the hair I have left, that it is so thin there now that I have a job covering my ear ,also the tumours that are still growing and are now at a stage that there is nothing else they can do so I am now slowly dying, so try and be positve . life is good no matter what happens, We dont realise that until its too late, best wishes to you .I know this wont help you I wish it would though

    Kessie

  • FormerMember
    FormerMember in reply to FormerMember

    Unknown said:

    I am so depressed and lacking in confidence due to my hair not growing back on almost the whole of the top of my head.  I loathe to have a wig or wigs because you would have to more than one if you wanted to change your hair style.

    I just want my own bloody hair back.....there has to be some way!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Unknown said:

    I am so depressed and lacking in confidence due to my hair not growing back on almost the whole of the top of my head.  I loathe to have a wig or wigs because you would have to more than one if you wanted to change your hair style.

    I just want my own bloody hair back.....there has to be some way!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • FormerMember
    FormerMember

    Hi sorry to hear that about your hair bless ya. I will now stop moaning about my under loss from now on . I was getting really depressed on my hair not coming back at the back of my head under my hair. Thinking about u and hope u find answers u want