Confessions of a sun worshiper: actinic keratosis and photo dynamic therapy

Fiona Clark

What is Photo Dynamic Therapy and how can it help with actinic/solar keratosis? Fiona Clark runs through her experience with the treatment.

 

I confess, I am a sun worshiper, but it’s taken its toll on my skin. Back in the day, as they say,  when I was a child (think late 1960’s here) there was no sunscreen except zinc cream – a thick white paste that smelt awful and once you reached teenage years was not a great look. Consequently I spent most of my youth with a blistering nose and burnt cheeks and shoulders.

Even when the clear sunscreens came onto the market in the 1970’s no one really took sun damage that seriously. It wasn’t until the 80’s when the ‘Slip, Slop, Slap’ campaign* was launched in Australia that people started to think about using sunscreen when they were sun-baking, but I still remember lying out in the backyard slathered in baby oil.

But now wish I’d taken the sun smart advice a bit more seriously. I’m now covered in sun spots, have had about 15 moles removed  (thankfully all benign) as well as one basal cell carcinoma cut out of my chest.

Being a very pale skinned blonde with green eyes and a lot of freckles and moles I knew my risk of skin cancer was high, so I started getting my moles checked every year from my mid 30’s onwards. About that time I started to notice small rough spots on my hands and face. Over time, my entire forehead became flaky – if I rubbed it, it was like a snowstorm as the skin came off.

When not to worry changes to time to worry

When the GP or dermatologists found these spots they’d usually freeze them off with liquid nitrogen and tell me not to worry. I kept coming back each year and the same spots would get frozen off again along with any new ones that had formed.

I remember being on the tube one day after having about 5 frozen off my face – which left nice red lumps – and being pretty much face-to-face with Jimmy Carr (yes, it’s true – he was on the tube) and thinking to myself – ‘great, I’m going to end up the butt of some joke about scary things you see on a train.’

To keep the forehead under control I was prescribed Solaraze (diclofenac sodium), a non-steroidal anti-inflammatory gel that’s used to keep excessive skin growth under control. It worked to a point, but wasn’t a long term solution.

As the years went by and knowledge about solar or actinic keratosis grew, the ‘not to worry’ message changed. Evidence was starting to show that these lesions were linked with a type of non-melanoma skin cancer (NMSC) called a ‘squamous cell carcinoma‘ or SCC – the uglier cousin of the BCC

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Squamous Cell Carcinoma

These are not usually fatal but they can metastasize in rare cases and require radio orchemotherpay.

They are the second most common type of skin cancer in the UK.  According  to the British Association of Dermatologists NMSC “accounts for 20% of all cancers and 90% of all skin cancers. SCC accounts for 23% of all NMSC.”

Having just had the BCC removed and armed with this knowledge I thought it was time to act.

My treatment options

I saw dermatologist Adam Freidmann on Harley Street. I chose him because he’d worked in Australia for a while and had a special interest in skin cancers.

We discussed the options and came to the conclusion that the two most suitable treatment choices for me  were the topical anti-cancer cream 5-fluorouracil or Photo Dynamic Therapy (PDT). At the time there wasn’t a lot of information online on either, but the pictures and the description of the flourouracil treatment I found wasn’t enticing. It took six weeks of applying the cream and after about two weeks of application people complained of weeping sores, being unable to sleep do to the incredible pain, let alone leave the house because of the way they looked. And then there was the healing process of another 4-6 weeks. In total the whole treatment would end up taking 3-4 months.

I opted then for the short and sharp option of Photo Dynamic Therapy or PDT. There was virtually no information about the PDT and what there was really didn’t described the process adequately – so I later found.

Many site describe the treatments as involving a ‘burning or stinging sensation’ that passes quickly. That may be the case if you have very little damaged skin, but for me it was excruciating. Ten minutes of sheer hell. (One dermatology nurse told me that it was the only time she’d seen grown men cry when they’d had the treatment on their head.)

The treatment, step by step

So this is what happened to me.

At the hospital that performed the treatment they applied a cream called aminolaevulinic acid. This was covered with a bandage as it’s sensitive to light and I was sent off to wait in the cafe for about 3 hours while the acid went to work targeting the sun damaged skin cells and making them sensitive to a specific wavelength of light.

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The photo sensitizing cream is applied and covered and I wait for 3 hours for it to do its work

When the time was up I returned to the treatment room and sat under a light. I was given a fan to hold and soon found out why. What was describes as a bit of stinging or a burning sensation was a major understatement.

As soon as the light went on the pain was toe curling. The fan helped slightly but not much and I was given the option to take a break half way through the ten minute session but thought if I stopped I probably wouldn’t be able to bear it being turned back on so went the distance. It literally felt like someone was attacking your face with a blow torch or holding your head under a grill.

The pain subsided pretty quickly afterwards – a few minutes I’d say – although the area still felt hot. They put some moisturising cream and sunscreen on and sent me on my way with my after care instructions – don’t touch, keep dry for a day or so, don’t go into the sun, apply moisturiser regulary. I must have looked awful because no one would sit next to me on the tube on the way home after each of the three sessions.

There was no way we could do the whole face in one session because the pain would be too much, so we divided it into three sections – forehead, nose and cheeks and chin. (You can imagine how much I looked forward to the next two sessions after the first one!) They couldn’t use a numbing cream as it interferes with the effectiveness of the photo sensitizing cream.

Over night the skin developed blisters and swelled. At one point I worried I would’t be able to open my eyes. When the chin was done it was impossible to smile for about a week. Even speaking was difficult.

Over the next few days it formed crusts in spots,  wept in others, and in some areas the skin simply sloughed off. I wont lie, there were tears and I did worry that I’d be scared for life. The forehead did get infected and I used an antibiotic cream on it for a week.

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Forehead blisters day 2 after PDT

Thank goodness for home delivered groceries because I could only go outside if I was wearing a hat or surgical mask to cover the areas as it would have scared small children.

Fortunately within about 2-3 weeks most of the scabbing was gone (my ‘Klingon period’ as I call it on the forehead was over) and the skin was smooth but a little pink for a couple of months.

There were no long term side effects except on the chin. The treatment affected the sebaceous glands and the skin there is now slightly ‘rougher’ than on the rest of my face.

I hadn’t expected the skin on my chin to be so badly damaged. There were no actinic lesions there that I could feel or see. It has now made me swap from a baseball cap to a wide-brimmed hat (belatedly) as I noticed that the caps don’t keep the sun off the my chin.

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Blisters and scabbing on chin 4 days after PDT

From the pictures you can see that even though I thought I only had a few spots of keratosis on my cheek and a diffuse case on my forehead, there really wasn’t a single bit of my face that wasn’t affected by the actinic keratosis. (The dermatologist who did the treatment said I was the second worst case she’d ever seen.)

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Day 2 – swelling and redness after PDT

I still have a few spots of actinic keratosis on may face that I get frozen off every so often, They’re around the periphery where the cream didn’t reach or near the eye brows. I fear that in a few years I may have to repeat the process, and yes, despite the pain I would do it again because it has been quite effective. My skin looks smoother and healthier and I no longer have a storm of skin flakes coming from my forehead. (I’m hoping that the amount of sun damage won’t be as bad the next time round.) I have a spot on my lip that probably needs attending too but that will really hurt! My hands and calves are also a mess.

Lessons learnt?

What have I learnt from all of this? I now religiously (and again belatedly) wear my 30-50+ sunscreen with a 5 star UVA rating. I wear my broad rimmed hat on sunny days and when on holiday in sunny spots. I try to stay out of the sun between 11am-3pm – but I don’t always manage this, and I have started to ‘fake it, not bake it’.

Yes, I still swim and dry off in the sun, but I seek more shade than I used to. I could do better of course, but old habits of a self-confessed sun worshiper die hard!

*Slip, Slop, Slap = slip on a T-shirt, slop on some sunscreen and slap on a hat.

 

 

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