Actinic Cheilitis, Precancerous Sun-Related Condition
Last updated: October 2020
I have been left with a condition that leaves my lips, tongue, and sides of the mouth to be sensitive, sore, raw, and to really burn. It makes talking, eating, and drinking more difficult. The burning never stops. It's been like this since late November 2019.
First appointments with primary care
In July of 2019, I developed what at first I thought was just chapped lips. I tried the regular treatments and nothing seemed to work. After about 6 weeks with no luck, I called the office for an appointment with my dermatologist. I was offered an appointment in October which was still several months away. I told the office I suspected I was dealing with actinic cheilitis, a precancerous condition, and was concerned. I don't think she knew what it was and offered me the same timeline.
While waiting for this appointment, I went to see my primary care office twice; 08/19/19 and 10/19/19. The physician assistant, told me it was not actinic cheilitis, after basically no exam, and she said I was mouth breathing. I told her I thought she was wrong, but she told me to use AquaPhor.
Diagnosed with actinic cheilitis
On the second visit, she told me to use Vaseline. I still told her I thought she was wrong in this diagnosis. On 10/28/19, I saw a doctor at dermatology who looked at me a few seconds and told me I had actinic cheilitis. I told him, I know.
He told me about the treatment he was prescribing and that I would hate it, and out the door he goes. No testing, no follow up. He told me if anyone asked who prescribed this for me to give them someone else's name. I did the Fluorouracil treatment for 12 days followed by a steroid cream. He was right; horrible and painful treatment (I took pictures).
Returned to the primary care office
I returned to primary care 1/2/2020 to say my lips are still very sore and burning. The PA told me it takes time and to use the AquaPhor. I returned to the dermatology office on 01/21/20 and saw a new doctor, who told me sometimes it takes longer and gave me several sample creams to try. The visit with him lasted about 2 minutes. Nothing worked.
I returned again to that office on 03/4/20, having had no improvement at all. He had students who did a quick exam, and she said she saw nothing cancerous with one of those LED type lights. Because of his short visit last time, my husband watched the time spent with me. The doctor told me that maybe something else was going on, but gave me more sample creams to try and said probably one of those would work and was out of the room in less than 90 seconds. I did have an appointment on 3/31 which I canceled because of the virus. I wrote to the owner of this practice and told him the story and I never received a reply.
Several appointments later...
To sum this up, I have had over a total of 6+ appointments and have not gotten much further than when I first diagnosed myself. My lips are still very painful, they are sensitive, sore, and burn 24/7. Portions of my tongue are also sensitive. Vanicream gives some relief but only for a short period of time. If not heavily covered in cream my lips start to feel very “pruney” and burn like anything.
On 06/29/2020, I knew I could not leave this untreated forever. I found a dermatologist close to home and made an appointment. He did a full exam, I explained the whole story to him about my lips, on how this has been going on for about a year, and I am worried that either I still have this pre-cancer condition, or my skin is damaged beyond repair. He decided on a course of Cipro for 10 days and told me to come back in 2 weeks. He also did a culture.
My return appointment was 07/14/2020. The doctor told me that I had a bacterial infection, and he doesn't know what it is.
Unanswered questions and concerns
I have no idea what to do or where to go. I don't know if I have some type of plague running through my body or what to think. I saw my primary care doctor on 08/11/2020. He mentioned that this could be something that was done to my skin during the treatment last year and these areas are beyond repair. He had no solution other than if I wanted something for the pain. After asking for a doctor's note of this visit, I found that he only mentioned that I "experienced an ulcerated rash and have problems with it". Not exactly what I would describe it as at all.
On the advice of the dermatologist I saw in June 2020, I went to a neurologist, who told me I could have “Angry Mouth Syndrome”. It is a condition that can come from the treatment of Fluorouracil, damaging the nerve ending, and destroying tissue. Maybe if there had been some care and effort into my treatment I would not still be in pain the following year. Upon my follow-up to this neurologist, I mentioned again about my lips and he had no answer but asked, "How much does it really bother you"? I had thought he was going to help me. I left the office in tears. No one cares.
This is just so wrong. I have been damaged. I have a problem eating and drinking hot and cold. Different textures can be difficult. These people caused me to continue the pain and they don't even have to acknowledge it. I have no idea what else to do.
Do you sunscreen in the fall?