Anyone had actinic keratosis turn into squamous cell carcinoma?

Posted by mizlynnie @mizlynnie, Nov 20, 2022

Has anyone experienced a severe case of actinic keratosis which eventually evolved into squamous cell carcinoma?

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@mojo244

Hey Ozgal,
Well I’m closing on 8 years remission!
It’s still a battle though as I have many post treatment issues…but I’m still alive!

MOJO

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Great to hear.
Thank you for your reply

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@ozgal

How on earth could that many doctors get that so wrong ?

Shaking my head.

I know your post is from 2022, but as i’m new to this wonderful site, i’m reading Everything others have to say.

I do hope things have worked out for you since this diagnosis.

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Hey Ozgal,
Well I’m closing on 8 years remission!
It’s still a battle though as I have many post treatment issues…but I’m still alive!

MOJO

REPLY
@mojo244

Start with your dentist. I was misdiagnosed twice by a FORMER family doctor and an ENT. They both diagnosed me with TMJ. A routine visit to my dentist a few days after 2nd misdiagnosis my dentist was looking at my neck. He asked how long I’ve had this lump in my neck. I said I’ve been to my doctor and ENT twice in the past few months and they both said it was a swollen saliva gland. I added that they both said I have TMJ.
My dentist proceeded to massage my neck and then conducted a mouth exam. He began running his finger under my tongue and said, “you don’t have TMJ but you need to get back to the ENT”. I replied that I see him the next day again for TMJ. My dentist replied, “no, he needs to scope and biopsy your throat!” I asked, is it not good Doc? He replied “no, I believe your base of tongue has a tumor and the lump in your neck is not a saliva gland!” My dentist asked who the ENT was and told me he would personally call him before the end of the day!
Found to be Stage IV Cancer, thank God for a phenomenal dentist!

Jump to this post

How on earth could that many doctors get that so wrong ?

Shaking my head.

I know your post is from 2022, but as i’m new to this wonderful site, i’m reading Everything others have to say.

I do hope things have worked out for you since this diagnosis.

REPLY
@cfbauer

Yes, I have had several surgeries to remove squamous cell carcinomas and one Mohs surgery to remove an infiltrative basal cell carcinoma. Actinic keratosis is a precursor to these kinds of skin cancer. My dermatologist says the stage for development of actinic keratosis is set, in many cases, years ago from prolonged exposure to sun especially without the protection of sunscreen. Actinic keratosis is not a condition that would occur inside the mouth which is lined with a mucous membrane and has no keratin. So I would have that checked out.
I have had several treatments with fluorouracil cream which is applied over a course of 2 to 4 weeks. Another product is efudex. Both are meant to rid one of actinic keratosis before they become cancerous. Interestingly, these creams will expose heretofore unseen actinic keratoses before application.
As the course of the treatment continues irritated red lesions appear representing these actininic keratoses. There are several studies that provide convincing evidence that taking 500mg of Niacin twice daily can curb the incidence of actinic keratosis by as much as 23%. Bottom line is WEAR SUNSCREEN!

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Discovered last night large lump about the size of a grape under the tongue. ENT appointment in 2 weeks.
Still have swollen lymph node behind ear (right side).
Still have ulceration at the site of biopsy performed on lip in Oct 22, diagnosing advanced actinic keratosis. The scheduled vermilionectomy was canceled yesterday by the doc and rescheduled for end of Feb.
Lesions inside cheek still present. They are not painful.
Starting to think all these symptoms are linked.

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@mizlynnie

Thank you for the links.
Throughout the summer, I had a non-healing lesion on my lower lip that was biopsied in early October. Result: actinic keratosis. After the biopsy, the lesion was gone and my biopsy site healed.
However, since then, I have new lesions both on the lower lip and inside the cheek. Is it normal for actinic keratosis to suddenly erupt again and spread from the lower lip to the inside of the mouth?
Wondering how I should proceed. Dermatologist or ENT doc?

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Start with your dentist. I was misdiagnosed twice by a FORMER family doctor and an ENT. They both diagnosed me with TMJ. A routine visit to my dentist a few days after 2nd misdiagnosis my dentist was looking at my neck. He asked how long I’ve had this lump in my neck. I said I’ve been to my doctor and ENT twice in the past few months and they both said it was a swollen saliva gland. I added that they both said I have TMJ.
My dentist proceeded to massage my neck and then conducted a mouth exam. He began running his finger under my tongue and said, “you don’t have TMJ but you need to get back to the ENT”. I replied that I see him the next day again for TMJ. My dentist replied, “no, he needs to scope and biopsy your throat!” I asked, is it not good Doc? He replied “no, I believe your base of tongue has a tumor and the lump in your neck is not a saliva gland!” My dentist asked who the ENT was and told me he would personally call him before the end of the day!
Found to be Stage IV Cancer, thank God for a phenomenal dentist!

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@cfbauer

Over the years (probably 10) I have had a low grade "in situ" malignant melanoma removed from my neck and several squamous cell carcinomas removed from my face and one from my ear. Most recently (6 weeks ago) I had a Mohs surgery on the left side of my nose for an infiltrative basal cell carcinoma. I live at high altitude where UV light exposure is intense. Best advice is, of course, early intervention. Your skin tag almost certainly has nothing to do with UV light exposure so is likely unrelated to what set me up for my various cancers. Also, the fact that yours is a skin tag seems to bode well for a very successful surgery. It would be a more difficult surgery if the carcinoma was part of what is called the stroma of the tongue i.e. the body or substance of the tongue. Disclaimer....I am not giving out information as a MD but as a veterinary surgeon who has similar familiarity with tissue and cancers. Best of luck, but I don't think you will need that as I have a good feeling about your outcome.

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Good morning. So I went to ENT yesterday for follow up and I am relieved to say that he is not convinced I have cancer. He said it’s very unusual for cancer to grow and fall off like the “tag” does. He will be requesting the pathology slides to review for a second opinion and I have to follow up with him in a month so we can monitor. He said if it grows back he will then take a biopsy and piece of my tongue to test himself. There is no evidence in my mouth of cancer or even a mark where the tag was on my tongue. He stated it’s more plausible that it’s a wart that grows and falls off.

I’m taking it as a win because I’m really not sure how to feel.

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@tlc9317

Hello, if you don’t mind me asking. How long ago were you diagnosed? I was just diagnosed on Sunday 11/27/22 and I am terrified! I see the ENT today because I had a small skin tag on my tongue that was sent for biopsy and that was positive for squamous cell carcinoma. What advice can you offer me?

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Over the years (probably 10) I have had a low grade "in situ" malignant melanoma removed from my neck and several squamous cell carcinomas removed from my face and one from my ear. Most recently (6 weeks ago) I had a Mohs surgery on the left side of my nose for an infiltrative basal cell carcinoma. I live at high altitude where UV light exposure is intense. Best advice is, of course, early intervention. Your skin tag almost certainly has nothing to do with UV light exposure so is likely unrelated to what set me up for my various cancers. Also, the fact that yours is a skin tag seems to bode well for a very successful surgery. It would be a more difficult surgery if the carcinoma was part of what is called the stroma of the tongue i.e. the body or substance of the tongue. Disclaimer....I am not giving out information as a MD but as a veterinary surgeon who has similar familiarity with tissue and cancers. Best of luck, but I don't think you will need that as I have a good feeling about your outcome.

REPLY
@cfbauer

Yes, I have had several surgeries to remove squamous cell carcinomas and one Mohs surgery to remove an infiltrative basal cell carcinoma. Actinic keratosis is a precursor to these kinds of skin cancer. My dermatologist says the stage for development of actinic keratosis is set, in many cases, years ago from prolonged exposure to sun especially without the protection of sunscreen. Actinic keratosis is not a condition that would occur inside the mouth which is lined with a mucous membrane and has no keratin. So I would have that checked out.
I have had several treatments with fluorouracil cream which is applied over a course of 2 to 4 weeks. Another product is efudex. Both are meant to rid one of actinic keratosis before they become cancerous. Interestingly, these creams will expose heretofore unseen actinic keratoses before application.
As the course of the treatment continues irritated red lesions appear representing these actininic keratoses. There are several studies that provide convincing evidence that taking 500mg of Niacin twice daily can curb the incidence of actinic keratosis by as much as 23%. Bottom line is WEAR SUNSCREEN!

Jump to this post

Hello, if you don’t mind me asking. How long ago were you diagnosed? I was just diagnosed on Sunday 11/27/22 and I am terrified! I see the ENT today because I had a small skin tag on my tongue that was sent for biopsy and that was positive for squamous cell carcinoma. What advice can you offer me?

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@gingerw

@cfbauer Like you, I have had the same things happen to me. In 2008 they removed a amelanotic [colorless] melanoma on my right forearm, resulting in 32 stitches. Before that it wasn't unusual for me to have actinic keratosis removed at every skin check, or a basal cell removal. I can recall all the way back to the late 80's.

Using fluorouracil cream does indeed pronounce the "hidden" keratosis spots. It freaked me out the first time it happened; I went running back to the dermatologist, since they hadn't told me about that side effect!

I have had several spots that were treated as actinic keratosis morph into squamous cell issues. The latest one is in the middle of my left eyebrow, treated with MOHS surgery. While it was treated for a couple years with the frozen nitrogen, that wasn't enough. Being very watchful, and knowing your own skin and conditions, is critical to good health. Two years ago MOHS surgery also was used to treat anodular basal cell skin cancer near my collarbone that had spread out below the skin surface, resulting in an interesting "J" shaped incision and scar.

Yep, wear your sunscreen all year around.
Ginger

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Thank you Ginger.
You confirmed my suspicion ... "I have had several spots that were treated as actinic keratosis morph into squamous cell issues."
My new lesions are not like the former typical cold sores, so I will be extra vigilant from now on. I'll know more after my derm appointment. Historically, he has treated the lesions with cryotherapy.

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