Actinic Cheilitis - do I need a biopsy, and should I be seeing a Oral/Orthodontics or Dermatology?

ANy help gratefully received! 9 months ago i suddenly had tingling on my chin and lower lip, and inside the lip swelled and became very tender. I thought I had cold sores coming, but no, and it continued like this for over a week. Went to GP, he gave me Aciclovir for 5 days, did not help. Swelling gradually subsided but lower lip developed pale patches, with skin flaking off daily. Two months later my dentist referred me to Oral and Orthodontics.

Saw consultant in Jan this year, he took a quick look and said it was sun damage, and I should use sunscreen. I asked if it was Actinic Cheilitis (as I had found out by then), which could be pre-cancerous. He said yes, and did I want a biopsy? I was taken aback and asked if I needed one. He said it was up to me, and would not say whether I did or didn't need one. I said I would have to think about it.

After a bit more research I decided to ask for a biopsy appointment, and turned up to find the same doctor. He seemed surprised and said I could have the biopsy if I wanted, but it could make things worse. I asked again if he thought it necessary or not, but he said it was up to me, and he didn't see any cause for concern. So I didn't have the biopsy.

The swelling, tenderness and pain inside the lip has flared up twice since, with tingling but no cold sores (but small blisters inside lip)

So, can I ask, is it usual to have a biopsy? I also expected some form of treatment to be offered, as per the NHS/Skin Cancer Org websites say. 

I also think I should be seeing a dermatologist too,as the condition is both on the inside and outside of my mouth. Any advice please? I feel this Dr is not sufficiently helpful in my case.

  • Hi Bluebrit and thank you for your post.

    I am so sorry to hear about your situation, this must be such a confusing time for you.

    Actinic Cheilitis  (A form of Actinic Keratoses) is often diagnosed just by looking at the lip, as it is usually caused by sun damage. Not everyone needs a biopsy. A biopsy is usually only done if the doctor is worried about what they see.

    Not all actinic keratoses require treatment and can improve on their own, but It is always best to monitor these lesions as a small percentage can turn into skin cancer such as squamous cell carcinoma.

    If treatment is needed, there are different options, and a hospital specialist can help choose what is best for you.

    This lip condition is more unusual in the UK, Actinic Keratoses is more common, so a lot of the information you find may be from overseas sites.

    The British Association of Dermatologists has written guidelines on the management of actinic keratoses which you may find interesting.

    If you are still worried, it’s okay to ask your GP to refer you to a dermatologist. If one GP says no, you can ask to see another GP in the same practice for a second opinion.

    I hope you find this information helpful.

    Please get back to us if you need any more information or support

    It might help to talk things through with one of our nurses on the helpline. You can call for free on 0808 800 4040, Monday to Friday, 9am to 5pm.

    Kind regards

    Tina

  • Thank you Tina, I have looked at the link which is helpful, and it would seem in my case to be in the 'Mild' category. However, as it is both inside and outside my mouth, and I cannot find any similar cases in my research, this is what is concerning me - is it the outside causing the inside symptoms, or the other way round? Is it usual or common for AC on the lower lip to also affect the inside of the lip?

  • I had Actinic Chellitus on top and bottom lip My dermatologist recommended I used the same cream I use on Actinic Keratosis I had to be extremely careful and apply with a cotton wool bud so as not to get any in my mouth It was quite a painful 4weeks and my lips looked awful luckily it was during covid so could wear a mask when venturing out When all the scabbing fell off my lips were soft and smooth I always apply lip protection these days when out in the sun Never had it inside my mouth so can’t help there Maybe ask if you can treat with the cream on your external lip 

  • Hi Bluebrit and thanks for getting back in touch

    It is difficult for us to know whether it is the inside or outside of your mouth causing this discomfort but if it is bothering you do speak with your doctor again.

    As Tina has said they can refer you to the dermatologist if this is what you would like and also the doctor may wish to try some treatment to clear this condition up, so do ask about this too.

    I hope things improve for you soon.

    Take care

    Naomi

  • Thanks, I will be asking about cream for the outer lip at my next appointment, as I understand from everything I've read that some form of treatment should be started on diagnosis. Can I ask if you had a biopsy? 

  • Thank you Naomi, I have spoken to my GP on the phone asked to be referred to a dermatologist, which he said he would do but there is a 12 month waiting list. I am thinking I will have to see someone privately, as 12 months is too long to wait when I am anxious about it being precancerous. I will be seeing my dentist this week (it was she who referred me in the first place as my GP failed to diagnose it). I have some questions for her, and hope she may provide some advice too.

  • No to biopsy I had a chapped lips for ages and a persistent piece of skin that when pulled off bled a little cleared up then reappeared I saw the nurse at my GP’s and she said it was Actinic Chelitus asked if I could use the cream I had been using on AK’s on the back of my hand Initially she said no but I then had a video call with the GP who said ok as long as I was extremely careful I would post pictures of the reaction but don’t think that’s allowed on here Basically my lips looked liked they had a bad case of impetigo  

  • TBH I pay to see a dermatologist privately as you can probably tell from my name I am a worrier and no way could I wait 12 months to have it checked I see him yearly and he does a full body check so quickly picks up any new AK’s and I then use the cream so they cannot become more serious He did say it’s only a minority that become more serious but they can’t say which ones might so a yearly check puts my mind at rest as apparently they take much longer than a year to develope into a more serious skin problem Not cheap but peace of mind is far more important to me