Photodynamic therapy (PDT)

[blueg33]

I thought I would see if anyone has had this treatment for precancerous cells.

My 11 year old daughter has Linear Epidermal Nevus and has been offerred this treatment as part of a trial.

Linear Epidermal Nevus is pretty rare and the Docs are scratching their heads about treatment, but think this is worth trying.

Clearly I am researching the treatment widely, but I wondered if anyone has experience of it and can give me an idea what it feels like and other issues or related problems so that I can contrast that with what the docs are saying.

The treatment will be on the abdomen and the back of one leg.

An 11 year old daughter is a precious (and mental) thing, so I want to be fully appraised of the risks, experience, pain etc before I agree to the treatment.

Thanks

Nick

[blueg33]

bump

[drfrank]

Hi,
Epidermal naevi are benign ! In a very small percentage they can turn into a very slow growing form of skin cancer that doesn't metastasise and doesn't really cause any problems other than local invasion.

PDT for these is next to useless as the ointment applied penetrates only slightly into the tissues and so it is only suited to very superficial lesions, not raised lesions like epidermal/sebaceous naevi.

Given that it is on the abdo and legs I would suggest using a carbon dioxide laser or even a simple shave excision.

I would suggest getting her seen by a plastic surgeon for an opinion. PDT will do little and can be painful let alone time consuming.

Drfrank

[blueg33]

drfrank said:

Hi,
Epidermal naevi are benign ! In a very small percentage they can turn into a very slow growing form of skin cancer that doesn't metastasise and doesn't really cause any problems other than local invasion.

PDT for these is next to useless as the ointment applied penetrates only slightly into the tissues and so it is only suited to very superficial lesions, not raised lesions like epidermal/sebaceous naevi.

Given that it is on the abdo and legs I would suggest using a carbon dioxide laser or even a simple shave excision.

I would suggest getting her seen by a plastic surgeon for an opinion. PDT will do little and can be painful let alone time consuming.

Drfrank

Thanks

They are not always benign as I understand it and can have implications for underlying organs, but that is rare.

The lesions are uncomfortable and 10 years of using Hydrocortizone creams hasn't really had any effect.

It is a plastic surgeon who has recommended this treatment as being less intense than laser, and likely to cause less discomfort. We have been told that laser treatment has proven not to work.

At each hospital visit we get 5 skin specialists and a plastic surgeon. The PDT is their joint conclusion.

As it can be uncomfortable we have put it off until after christmas.

The problem is that there are so few therapies available. I will ask about Shave excision, but if I recall correctly the lesions will grow back?

The main concern is the abdomen and heel and toe of one foot where the lesions are particularly bad and cause masses of discomfort. But as you can also imagine at 11 years old she is becoming increasingly sensitive about her appearance etc.

[BlackVanDyke]

Just want to express sympathy, had a quick google and it doesn't look fun.

It sounds like you have about as good a team of experts as you can get, the only other thing I can suggest (pretty much for anybody with ANY rare condition) is talk to as many other people with it/parents of kids with it as you possibly can. In particular, try to find some slightly older girls or young women who'd be prepared to talk to your daughter directly. Contact A Family or Rare Disease UK might be helpful here? I've had some contact with both and they're both good resources.