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I have Bowens Disease, with many lesions currently over ...

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Guest
Guest

I have Bowens Disease, with many lesions currently over my feet and lower legs and hands, and sporadic lesions on upper legs and arms. It took five years for the correct diagnosis - the assumption is that any person developing Bowens must have spent a lot of time in the sun, which I haven't. My Bowens was caused by arsenic ingestion from taking a tonic at the age of 6 until I was 9 (this was in the mid to late 50's, when tonics were generally given to slow developing children) so it took longer to diagnose. Initial treatment was experimental topical application of Aldara cream, but with only limited effect. Subsequently we moved to excision of some of the more troublesome areas, but this is painful (feet and hand injections for local anaesthetic are unbelievably painful!) and leaves a lot of scars. A year ago we commenced treatment with with red light (PDT) with some success, but lesions tend to regrow. Treatment is painful but the lesions do initially appear to scab over and fall off. Regrowth takes about two months. The cream is effective about 3mm down through the skin, and hopefully a new cream will be developed that goes deeper. We are about to commence a second course of treatment (we can only treat about three square inches at a time). So far lesions have largely remained benign - I have had one malignant melanoma removed from my foot, but we are not sure if a Bowenoid lesion has changed, or it is just a one-off. I read everything I can as I find few people even in the medical profession know anything about this disease, so I need to become my own "expert". This has been very helpful in explaining to new practitioners what these strange lumps are on me!

[i:b63baac4fb]This message was automatically imported from the original Patient Experience[/i:b63baac4fb]

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3 Replies

  • Guest
    Guest

    Posted

    I have a son who is 12 years old and has bowens disease, it is on his thumb, he had an op and they took all his nail off and quite abit of thumb they also put a skin graphed on it,he was ok for 8 mounths till this funny looking wart come on the top of his thumb. again they did a op took that away and found its was bowens ,so now he has to go back in again and have some more took off his thumb as they havn,t got down to the root.as for bowens been related to to much sun, well my son is 12 and hates hot weather and he dosn't need a tan as he has olive skin slightly taned,and as for children getting well ive got a child what has,id love to know if there is any other childern out they what have it.

    [i:45b6436260]This message was automatically imported from the original Patient Experience[/i:45b6436260]

  • lesley05714
    lesley05714

    Posted

    I have had a growth on my leg for around 15 years thinking it was just part of the marks that come with age; but when it became too prominent, I showed a locum doctor who was quite animated and said not to be alarmed but he thought it was 'precancerous' Bowen's disease. I was given some cream to try for two weeks and to come back to the surgery and follow it up if it didn't go. Of course it was still there but the locum doctor was only covering for holidays and had left. I went to another doctor in the surgery who booked me in for a biopsy...it has been 5 months and with two phone calls to chase it up I have finally got an appointment for a biopsy for December 5th. After reading the above, I am quite concerned, has anyone else any advice?
  • brenda73235
    brenda73235 Guest

    Posted

    I have got Bowens disease as well and have had it for about 20 years gradually getting worse.  The worst of my lesions are on my legs but also have them on my arms chest and starting on my arms.  I have had all the creams lotions and still using one lotion on my legs which is very like Eldara but put on with a brush.  It is very painful all the time and I am not coping with it very well.  I have been under a specialist now for about 15 years and so she decided to send me for a second opinion on Wednesday.  I also had arsenic given to me when I was 8 years old which was in the mid to late 50s and I have always maintained that this has not helped my bowens disease.  I asked the specialist specifially when I went to see him this week if I had arsenic poisoning but he said that I have not.  I find this very strange as it was about the same time when you had medicine and tablets in the 1950s and you have not it very bad.  

    I have had many biopsys and had them taking out surgically buy they still grow back again.  I agree that it is very diffucult to get a proper diagnosis and I am now feeling that there is very little that can be done apart from having them zapped with liquid nitrogen every time.

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