Overview
Squamous cell carcinoma and epidermolysis bullosa
If you have epidermolysis bullosa (EB), you might be at higher risk of getting a type of skin cancer called squamous cell carcinoma (SCC). This type of cancer starts in the top layer of your skin. In some cases, it can also start in your mouth.
1 in 5 skin cancers are SCCs. Your risk of getting SCC is higher if you have:
- recessive dystrophic EB (RDEB)
- dominant dystrophic EB (DDEB)
- intermediate junctional EB (JEB-I)
- Kindler EB
The risk is highest in people with severe RDEB. This risk increases with age, but it can also affect young people.
If you have EB simplex, your risk of getting SCC is the same as in people without EB.
Checking your skin
Whatever type of EB you have, it’s important you check your skin regularly and know how to find the early signs of skin cancer. You and your carer should be aware of unusual changes in your skin.
Remember to check areas of your skin that you cannot easily see by yourself.
If you have severe EB, your EB nurse will visit you at least every 6 months to do a whole-body skin inspection.
SCCs can develop anywhere but are commonly found in areas where your skin is damaged more often. This includes:
- your ankles
- your knees
- your wrists
- the backs of your hands
- any other areas where you have frequent blistering, wounds and scarring
SCCs can look different for different people. It’s difficult to predict what the symptoms might look like for you. Talk to your EB nurse if you notice anything that is unusual for you.
Contact your EB nurse if:
- you find areas of your skin that are different to what you usually expect
- you have a wound that does not heal
- you have a wound that’s getting bigger quickly, especially if it's bumpy or “cauliflower-like”
- you have a deep wound, especially if it has raised or rolled edges
- you have any thick, bumpy or crusty areas on your skin
- you have a wound that feels different to usual – it might tingle, feel very painful, or not painful at all
Take photos of your skin from different angles and send them to your EB nurse. Try to use good lighting and make sure the photos are not blurry. Your EB nurse might visit you at home or arrange a hospital appointment for you.
Having a skin biopsy
We cannot diagnose SCC just by looking at your skin. If your EB nurse is concerned about a change to your skin, we’ll need to take a small tissue sample to test it for SCC. This is called a skin biopsy.
When we do a skin biopsy, we give you an injection of local anaesthetic to make your skin numb and make sure you do not feel any pain. We take a few tissue samples by cutting or scraping your skin. This can be uncomfortable but should not be painful.
In rare cases, we need to use general anaesthetic, which means you will be asleep during this procedure. We’ll discuss this with you if we need to do this.
It can take up to 2 weeks to get the biopsy results.
Treating squamous cell carcinoma
If the biopsy results show that there are cancer cells in your skin, we might recommend surgery to remove the cancer. Your EB doctors will discuss this with you and answer any questions you have.
Before surgery, we might need to do more tests depending on the size and location of the cancer. This can include:
The surgery will usually take place within a few weeks after getting the biopsy results. Your EB nurse will support you throughout this procedure.
Although the surgery is effective, there’s a chance that the cancer might come back after we’ve removed it. It’s important to keep checking your skin regularly.
More support
Thinking about cancer can be emotionally difficult. It’s important that you keep living your life while being aware of your skin. Talk to your EB nurse if you’re stressed or concerned.
You can also contact DEBRA, the national charity supporting people affected by EB. Call 01344 771 961 for more information.
Resource number: 0725/VER3
Last reviewed: January 2026
Next review due: January 2029
