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Cancer Q&A

I have EB. Will I get cancer?

Not everybody who has EB will get cancer.

People with Dominant Dystrophic EB, Recessive Dystrophic EB, generalised intermediate Junctional EB and Kindler Syndrome face an increased risk of developing an aggressive form of a skin cancer, Squamous Cell Carcinoma (SCC), at some point in their lives.

There is no evidence to suggest that people with EB Simplex face an increased risk of developing SCC.

I’ve heard skin cancer in EB is ‘aggressive’. What does this mean? 

A cancer is aggressive when it forms, grows or spreads quickly. In people with some types of EB, SCC spreads and grows more quickly than in people who do not have EB.

As this cancer can spread fast, it is important to get it evaluated by a specialist EB dermatologist quickly.

How do I know if I have skin cancer?

SCC in EB is hard to spot – it can often look like normal EB skin.

It’s advised that you have regular check-ups with your specialist EB team to look after your skin and help spot any cancer early.

Be aware of what is typical for your skin and look for any changes. Anything that feels different, does not heal or has a fixed scab that won't lift are all signs that you need to contact your EB nurses or specialist centre for a wound check. It may be nothing to worry about but it’s better to check.

If you’re not already registered, ask your GP to refer you to one of the specialist EB teams for regular check-ups.

I think I have skin cancer. What do I do?

Your EB specialist should be your first point of contact – call them immediately if you think you might have skin cancer. They will be able to help you get a diagnosis and guide you through potential treatment options.

If you’re not yet registered with a specialist EB team, see your GP and request a referral to one of the teams.

I have skin cancer. What are my treatment options?

Naturally the word ‘cancer’ is scary but there are treatment options.

Treatment options vary from person to person. Surgery may be needed to remove the cancer and a skin graft may be required to help close the wound.

Sometimes non-surgical treatments are used. Your EB specialist will be able to discuss what options might be appropriate for you.

I’m worried about my health and it’s getting me down. Where can I go for some support?

If you’re feeling anxious or concerned about your health and find that this is affecting your everyday life and mental wellbeing, talk to your EB nurse or doctor about getting some psychosocial support or ask your GP for a referral to local services.

How can DEBRA help?

We’re here to support everyone affected by EB, including individuals, families, siblings, carers and healthcare professionals.

For example, we can:

  • Support you to tackle a wide range of issues around EB including access to benefits, equipment and financial support if you’re unwell 
  • Award a grant to help towards expenses if you’re in hospital for more than one night
  • Provide healthcare professionals involved in your care with Best Practice Guidelines for Cancer in EB (commissioned by DEBRA International) – your EB team may also be able to give these to you
  • Give you information about respite care, hospice services and helplines

We also provide extra funding so that some EB nurses can support people suffering from EB at home and train local staff to provide EB care. 

Call DEBRA on 01344 771961 to find out how we can help you.

Please note: your EB team should be your first point of contact if you think you might have cancer. DEBRA can’t provide medical advice, although we can support you in many other ways.

What research is taking place to find more effective treatments for cancer in EB?

In a ‘first in EB’ clinical trial, an international team of researchers, funded by DEBRA, aims to investigate whether a drug called Rigosertib could be used to reduce or destroy cancer tumours which have not responded to conventional treatments. Find out more about the trial here.