Hi I have ongoing AK called actinic cheilitis on my lip as well as several rare systemic autoimmune diseases - so heavily immune suppressed. I’ve been using pulsed Efudix cream off licence for 3 years in the hope of getting rid of this dysplasia but finally I saw a maxila facial surgeon instead of my dermatology professor and he insisted I stop and wait six months then re-biopsy. AK ok lip is viewed as higher risk of invasive Sqc and my very fair skin and immunesuppressant are also of concern.
Anyway I had two punch biopsies taken from either side of my lip on Monday - and then told that the max fax dr would phone me in 6-8 weeks with results. This seems an awful long wait? It’s all gone pretty horribly too as I’m on a liquid nutrional suppliment diet due to other GI condition and scalded my lip badly yesterday on some soup. So a duty max fax phoned and asked me to come in but we decided to wait until tomorrow as I was busy. I want to ask him if I can get results sooner if it’s full on squamous cell now but maybe 6-8 weeks is normal these days with pandemic?
Hi and a very warm welcome to the online community
I'm sorry to read that you've had such a long term problem with actinic cheilitis as well as dealing with other health issues.
There really isn't a 'normal' length of time to get the results of biopsies back. It mostly depends on how busy the pathology laboratories are in your area of the country. Pre-covid my first biopsy result took 6 weeks and while we were in the middle of the pandemic another biopsy result was back in 3 weeks.
Waiting for results is really horrible and can be stressful. I found the best way to cope for me was to fill my time doing things I enjoyed so I didn't have the time worrying about something I couldn't change. Lots of people find mindfulness really useful and, if this is something that you might like to try, clicking here will take you to the NHS page where you can download apps some of which are free.
You might find this article on how to ease worry when waiting for medical test results helpful as it gives various hints and tips.
How did you get on seeing the consultant today?
x
Thanks so much for replying so supportively. I didn’t see the nice max fax doctor when he phoned on Friday because I was out by then heading in other direction to my hospital. But he seemed kind and offered to phone me next day (yesterday) to check that no infection ie cellulitis from scalding it badly on Thursday. He phoned yesterday and I said it’s drying up well but ‘fessed up that I’m worried it’s full blown Sqc now after 7 months off the pulsed Efudix my dermatologist had me on.
I said I’m worried because last time I had the biopsy 3 years ago it healed up easily - no brown yellow chapping all over my lip - and only showed mild AC. This time the yellow/ brown chapping is growing over my whole lip and over the scabs and stitches. 7 weeks seems a long time to wait for a phone call with results from a Max Fax who has only met me once briefly and has contradicted the plan his dermatology Professor (who knows me very well and understands a lot about my immunology profile) colleague had for me. And now she’s backed right off and has agreed to let him take over with my actinic cheilitis for the time being.
Yes I must try mindfulness more. I’m waiting for ACT from clinical psychology for my complex physical conditions but it’s been over 2 years now and although I’m on their waiting list there’s a big issue with unfilled job vancancies. Due to fatigue and pain from my other autoimmune diseases I struggle with concentrating on anything online. I need one to one help to keep me focussed on how to be mindful - otherwise I can’t be in the moment because I’m too busy trying to figure out the technology and make sense of what I’m reading or hearing.
Thanks for explaining that 6-7 weeks wait for results isn’t that unusual. I’m guessing that they are looking for other rare connective tissue disease stuff as well for diagnostic clarity.
Anyway I’m going back tomorrow as I have an outpatients apppointment anyway with a different specialism. So hopefully I can get the self dissolving stitches out as they seem to have hardened up with the crusting and scales so lip feels very tight although is healing nicely. He said he would try to see me himself to reassure me. If I’m concerned then he is too. I guess he can see why from looking at my extensive notes and diagnostic history. What a relief to have found such a kind and helpful doctor.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007