Skin cancer: my experience with photodynamic therapy (PDT)

Skin cancer: my experience with photodynamic therapy (PDT)

Nikki ParkinsonHealth, Life 61 Comments

As a pale-skinned Aussie kid who grew up in the 1970s not wearing shoes to school, let alone hats or sunscreen, I’ve done extremely well to get to almost 53 before having my first skin cancer treatment: photodynamic therapy (PDT).

At my annual skin check this year, I asked my doctor about the small area of flakey skin on the bottom right of my lip line. It would come and go but never stay away. She told me it was skin cancer – solar keratoses – and there were more on the bottom left of my lip line. More I couldn’t even see or feel. (Below is just before I went in for the treatment)

BEFORE

Before Photodynamic Therapy (PDT)

Because I’m vain (and frequently have to schedule my working week around photoshoots), my first questions were about down times from treatment options. See above: VAIN.

My doctor said that this area would be a good candidate for photodynamic therapy and that downtime would be about a week. This was significantly less than the alternatives of laser therapy (weeks) or surgery (months)

I went away from that appointment madly Googling for any real-life experiences and photos from the treatment. To be honest, there wasn’t much, which is why I’ve chosen to write about my experience here. (👋 if you’ve stumbled across this post via a Google search)

Before I get into the nitty gritty and some very non-pretty lip photos (consider yourself warned), I want to reiterate a skincare message that I’ve been shouting to the rooftops for as long as I’ve had a platform to do so:

Wear sunscreen. EVERY DAY.

The only reason I’ve not needed treatment before this year is because my mum was ahead of the times and slathered us in sunscreen when it was far from the trend of the day. This was the era of baby oil, tin-foil sun-baking and tan lines worn as badges of honour.

That early sunscreen habit stuck and continues to this day and my skin is thankful for it. Yes, I’ve stuck to a daily skincare routine since I was 18 but without sunscreen being the front and centre of that routine, I would not have the skin texture and colour I do today.

AFTER

Skin cancer: my experience with photodynamic therapy (PDT)

Photodynamic therapy: how it works

A light-activated cream (Metvix) is applied to the affected area (anywhere on the face or scalp). Over a period of two-three hours, this creates a reaction in the cancerous cells to produce a chemical that, when activated with light, selectively destroys those cells but leaves the healthy ones alone.

1. Metvix applied.

Metvix applied photodynamic therapy (PDT)

2. Affected area is covered in plastic and tape.

Affected area covered in tape Photo Dynamic Therapy

3. I can no longer talk. Some in my household would be happy about that but I’m in the surgery, socially isolated for two-three hours with my laptop. I can’t annoy anyone with my words. I’ve stuffed my mouth with tissues in the hope that I don’t drool too much. I do.

Waiting 2-3 hours for the Metvix to do its thing

4. My doctor applies a dental block to my lips. It’s ouchy and causes an adrenalin surge in my body. I’m shaky and my heart is racing. Not fun at all.

5. It calms down and the light exposure starts. I’m under for seven minutes. As someone who loves a monthly LED treatment as part of her facial, I can tell you this is NOT the same and far from relaxing. Even with the dental block, it feels searing around the lips, like burning.

Dental block in: Photo Dynamic Therapy

6. I sit up, try to drink from a straw (spoiler alert: it’s not possible with a dental block)

7. After about 20 minutes, I’m off home with my post-treatment care instructions and the beginning of my  obsessive daily looking in the mirror to see if it’s healing.

Photodynamic therapy: after-care

Imagine the worst combination of sun and windburn, with a dose of fresh chilli on top and you’ll come close to understanding just how much my lips hurt in those early days.

It’s essential to cleanse (with a moisturiser like Cetaphil or QV) and moisturise the area three times a day but because it’s the lips, I found I did this more often, especially after eating. 

And my tube of Lanolips Golden Dry Skin All Over Salve was never out of my sight. I slathered this on my lips throughout the day and layered it up overnight. This is my favourite product for putting on my lips before bed every night and it worked brilliantly during the 10 days post-treatment. 

You need to keep makeup away from the affected area until its healed and it’s essential to keep out of the sun during that time as well. Don’t exfoliate or use products with acids or active ingredients until two weeks afterwards.

Now that it’s healed, I make sure I apply an SPF 50 lip balm when heading outside. I’ve been very impressed with Ultra Violette Sheen Screen SPF 50 Hydrating lip balm (you can’t go wrong with any of the shades!).

Photodynamic therapy: the diary

Day 1-9 Photodynamic Therapy (PDT) on lip cancer

Day 1: When dental block wore off, it felt tingly, like chilli sitting on my lips. I cooled my lips on the side of a very cold wine glass. It was Friday. 🤷‍♀️

Day 2: Woke up with crusty, dry lips and that feeling when you’ve got really bad sun or wind burn. Made a really bad decision about drinking a margarita that afternoon. Ouch. But tasty. Introduce a glass straw as a work-around. Everything really is figureoutable. 

Day 3: That burning feeling was dialled up with a side offering of blistering and puss. SO attractive. 

Day 4: Skin started coming off and there was more blistering. The area wasn’t as painful as long as I kept it moisturised and away from acidic food. 

Day 5: There was less skin flaking. A line of small, clear blisters appeared along the bottom lip line. I did a photoshoot for a client, avoiding any close-ups, utilising hair flicks to hide my lips. Dinner fail: Asian lime dressing was not a good idea. 🤦‍♀️

Day 6: You’d think I’d have learned by now but I made the mistake of including tomatoes on my sandwich – big mistake. The swelling was down but the lips was stingy and sensitive.

Day 7: The swelling and blisters had disappeared. I woke up for first time not feeling pain or dryness.

Day 8: There is further improvement but the lips were still a little tender and there was still some stinging.

Day 9: The lips still got very easily but redness was just on site of the cancerous cells.

One month: I got the all-clear from my doctor. She was happy with how the treatment had worked but will follow up again in three months’ time.

1 month post PDT for lip cancer

Photodynamic therapy: the verdict

This isn’t a treatment that’s covered by Medicare in Australia, which is disappointing, but for me it was an ideal choice to address a problem before it got worse, with as little down time as possible.

It cost me $250. The cost depends on the area to be treated and can range up to $700. You may require more than one treatment to achieve the desired result. 

I highly recommend this non-surgical treatment if advised by your doctor or specialist. The short down-time and minimal discomfort was worth it.

So, tell me, is this a treatment you’ve undergone? What were the results? When was the last time you had a skin check?

Please note: I’m not a medical professional. The above experience was just that – my experience. Talk to your GP or skin specialist for advice specific to your skin. If you’d like to know details of my doctor, who does my annual skin checks and who carried out this treatment, please email [email protected]

Comments 61

  1. I just had PDT treatment on my lip after previously having a bcc removed approx 10yrs ago and a Scc removed approx 2mths ago with MOHs surgery. I found the pain tolerable (panadol) Iwas told to put vaseline on my lip regularly and to keep it in the fridge so it is nice and cold. Also was given antibiotic cream and told that even though I had only ever had a coldsore once in my life when I was in my 20s that the PDT could activate the virus so was given tablets to (take for 5 days) make it go away. All in all prefer it over efudix which my husband used.I am also the same age as you so we were brought up in the era of the sun

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  2. Day 1 after getting PDT with red light on my nose this morning for a nodular BCC and general sun damage. I chose PDT rather than surgery which was recommended, but after 6 BCCs and 1 SCC I’m feeling fragile when it comes to more excisions. I’m 51, born and bred in QLD, lots of outdoor sport as a kid, and Scottish/English heritage. I haven’t been a sun-lover since the age of 20yrs, but paying for the earlier exposure. The pain during the procedure and for the first 3 hrs was really really horrible, and I do have a good pain tolerance. I had my chest done last year which wasn’t as painful. I’m very red tonight and have been told I’ve had a great reaction, so I’m expecting make-up hopefully in 7-10 days. The redness on my translucent-like skin will likely stay a few months, but I’ll be so glad to have been treated. Necessary pain for a life well-lived !

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      1. Thank you. Like you I have found very little information on this from people who have experienced it,. Thanks for raising awareness with your experience.

  3. Just wondering – am having my full face done in 2 wks. Did you all drive yourselves home after the treatment? Or cover right up & get someone to take you home afterwards? Im about a 35-40min drive home @ 2pm so right at full sun time??

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      Hi Ang, I did but I only had the small part of my lip done that you can see. Given your circumstances and the time of day, it might be best to have someone drive you so you can cover up your face.

      1. I do drive myself home. I put sun visor down on car and wear a large hat that goes over the side ad a few inches. Sometimes the nurse suggest sun screen being applied before leaving office.

  4. Nikki, I live in Texas. My dermatologist gave me two options but decided to do the chemo cream. Not real happy about using it. The area will be my forehead and temple area. I’ve read up on that and it seems to be a lot longer healing time. Plus I have dogs and grandchildren and they can touch me. Side effects were scary too. We are heading into the hotter time of year so there is that too.

  5. I’ve just had my first treatment on the side of my nose with Metvix & then 20mins of PDT. Holy crap! I’m so glad I found this site and all the comments. I’ve come back to work thinking I could just jump back in, but the burning is so intense and I’ve got a huge headache; I can’t even put my glasses back on. They really downplayed it at the dermatologist so I was feeling like a massive baby when I asked them to stop and give me a local anaesthetic.

  6. I am contemplating using the Metvix as my dermatologist recommends that to clear my face of precancerous spots. So luckily I have discovered your site and found all the posts very helpful. I will post my experience after I have completed the treatment. My dermatologist recommends it is done in the winter months, so it will not be for a few months. One thing I have gathered it will be painful. Years ago I did the Efudix (not sure if this is the correct name) on my face, it was ok, but the downtime was about three months before my face looked clear.

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  7. So good to read all the comments.

    Im a 49 yo with many childhood burns to the face, several blistering events and adult life in the sun through sport.
    I had several spots of flaking skin that wouldn’t go away, could not be exfoliated away. Ive had several skin cancer spots treated over the past 15 years.
    I’m on day 4 of whole face PDT, after 2 hours in sunshine. hoped I was in for a 5 day experience, back at work on day 7. That went pear shaped on day 1 when I was red well before they expected.
    I’ve had a big ‘flare’ up, which they think is a fantastic result and will eventually look great. My whole face is still red, has 100s of white sores where the chemical has reacted with sun damage. Especially around the nose, area above lips, lips and whole chin and sides of mouth. So maybe recovery will be more like 10 days?

    Throbbing was a possible sign of infection so went on medication arvo of day 3.
    Today a nurse check said I was on track for a great result. I can’t see that far yet as I’m so uncomfortable. Taking it one day at a time.
    I’m by myself luckily, won’t let boyfriend visit. Would be harder with a family to look after, so take some time out if you do this.

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    2. My PDT was only a 15 minute treatment after 7 days of twice daily application of efudix cream. This was for solar ketoses on my lips (one spot on each lip diagonally opposite.)

      Took 3 weeks to the day to lose the final scabs!

    3. Interesting to read your experience after daylight PDT. There’s not a lot out there about people’s reactions to it, but I understood that it’s not anywhere near as painful as PDT with red or blue light. Guess you wouldn’t call your therapy pain free, though!

      I can’t figure out why daylight PDT isn’t more widely used. I’m considering going for a session in the fall.

  8. Hi there,

    I too have solar ketosis on my upper and lower lips. My treatment seems to have been more drastic.
    After twice daily applications of Efudix (often used as a once daily treatment for a month) for 7 days I was ready for my PDT treatment.

    I had extreme reaction to the cream in the first instance and the following has been an experience of pain and grotesque swelling, pustulating and bleeding lips and it’s not even been a week.

    I have images taken daily and would happily share.

    My post treatment care was to bathe lips in salt water every hour, and then application of Vaseline. Use of ice packs was recommended which I did for the first 4 days. I found that using a big bowl of warm salty water and immersing my whole mouth was both more soothing and more effective than swiping with cotton pads soaked in salt water. I blew bubbles in the water to loosen the dead ‘zombie’ skin than needed to be sloughed away.
    I’m hoping I can venture out in public after 10 days. At present I’m still drinking through a straw and have to gently fork food into my mouth as it’s too painful to open very far. It’s now day 6 counting the day of procedure as day 1.

  9. I had pdt treatment done this last Friday. The next day my cheeks and all around my eyes puffed up. I’m still swollen day 3. Just didn’t expect swollen eyes when I wore eye protection.
    I’ve been taking Vitamins A&B wondering if it’s a drug interaction?

    1. Hi Lorena
      My eyes without fail always swell after having PDT treatment. The nurses advised me it was due to fluid buildup. It’s quite an aggressive therapy and any trauma to the face such as this will cause fluid buildup and swelling. I find it’s worse when I have my forehead done because the fluid tends to move down, hence sometimes my eyes end up completely closed from the swelling. The first time I had it done 20 years ago nobody warned me of this reaction and the next day I couldn’t drive because my eyes were completely shut.
      Good luck with your results. I’m sure you’ll be happy with this treatment. Not only does it get rid of some cancers it’s also good as a preventative treatment.
      Regards
      Kathryn

    2. I had whole face treatment last Tuesday and day 2 and 3 were excruciating. my whole face was throbbing and so swollen including eyes, my Dr had warned me it might happen. Day 4 I was still very red and swollen but the heat and pain had gone.
      Yesterday was Day 5 and I couldn’t believe how much better I felt or how quickly I had recovered and today, Day 6 I am very very flakey but starting to look slightly normal in parts.
      Previously I had a BCC (temple) and an SCC (neck) surgically removed so I knew I needed to do something to treat the several solar ketatoses spots on my face.
      I had recently had a surgery and was mostly recovered and resting up on the couch so I took the opportunity to have this at the same time.
      I am almost in a place where I can say Im glad I did it.

      1. Wow. Thanks for the detailed info. What a journey for you. Am contemplating doing this treatment for 2 keratoses on my upper lip.

  10. Your site is very helpful and complements to patients for quality of their responses. I have had blue light treatment for face and scalp at least 10 times over a several year period. Despite the discomfort it is the most efficient treatment compared to the various creams . My reactions over the years, have been very significant and very uncomfortable to not too bad and not sure why it has varied.
    Thanks!

  11. I am 56 years old (baby oil in the ’70s!) and had my treatment on Thursday morning (blue light – entire face). It’s now Sunday night and the pain is improving a bit, but the itching is in full swing and the peeling is ramping up significantly. I look hideous – worse than yesterday – and I’m wondering when it will peak. Even though I’ve done this twice before I seem to have blocked out all memory of the healing process, so I’m really glad to have found this page! My hot flashes are adding a whole other level of discomfort (the heat whenever they hit feels like a million needles in all the worst spots), but I do know it will be worth it in the end because the AKs will be gone and my skin will be smoother, as well. Thanks to all who shared. I feel less alone!

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  12. I had my PDT done yesterday, full face and both hands. My hands are fine but my face is on fire and I’m desperately searching for information regarding how long until this pain subsides!!! I’m happy to share some photos for others, so little information out there regarding this treatment!! Thank you for your article

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      1. Hi Julie,
        The pain is pretty intense and I did need Panadol. Just hold on to day 4 and it gets easier. Wash your face daily with salty water. I found Vaseline a little too heavy. The pus would just run down my face at night. QV Intensive was much better. I’m not sure how to post a picture. It sure isn’t pretty.
        Karen

  13. This website is a godsend. There is not much information post PDT. Like everyone I was proud of having the brownest belly from sun baking in baby oil during the 80’s. I’m on day 5 of having nose and cheeks done and the pain is excruciating. The itching is not fun either. Crust on or off? Very confusing information out there. Now I know that others have gone through this and it is worth it. Thanks!

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      So glad you found this post Karen … that’s why I wrote it. I couldn’t find anything when I was searching before my treatment. Hope you come through the other end feeling fabulous and skin cancer free.

  14. I’ve been getting PDT treatment for over 20 years. I was one of my dermatologist’s first patients in the very early days of this treatment. It has saved my face. I did need to have one aggressive BCC cut out of my face where PDT would not have worked. However I’ve had 6 more cancerous lesions on my face which PDT therapy has cleared up. From my experience patients definitely require more than one treatment (over years) depending on the level of damage of course. I’m also fair with Irish & Scottish descent and grew up in the 1960’s & 70’s in Queensland. For me the treatment is continual work in progress but it definitely works. I’ve also had part of my chest done but not as often as my face. Many more have been cut out of my legs & arms etc but that’s another story. I agree, I see young photos of myself when I was as brown as a berry and now I cringe when looking at these photos. How we ruined our skin in those days because we thought it looked attractive.

  15. I just had my whole face done with the Metvix. I had to also go outside and sit in the sun to activate the cream. It hasn’t been too bad. Just like really bad sunburn. Hopefully it works! The doctor wanted me to do the effudix but I chose PDT because the effudix side effects sounded brutal. Thanks Nikki and everyone else for sharing.

  16. I’m 6 and a half weeks past the initial treatment. The area of concern is still inverted, flat and peeling. Does this sound normal?

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    2. I had my whole face done 16 days ago
      The first 9 days I’d say were brutal
      I couldn’t leave the house – it was painful and very ugly
      However my skin now that it’s recovered ( I didn’t think it ever would) is improved
      It’s smooth and less red

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  17. I am into day four after having the PDT procedure done on my face, neck and chest and are off for a checkup this afternoon. I found it to be quite intense under the lights then after coming home l unfortunately ended up in emergency as l had a very big drop in blood pressure (diagnosis Hypersensitivity- who would have thought!) All peeling now and looking a bit hideous but if it means no more skin cancer then it’s a job well done. With only baby/coconut oil used when young, SPF 50 is now the way to go ~ and just think how young I’m going to look when I’m all healed!

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  18. I think it is useful to differentiate between blue light and red light therapy. The red is far more penetrative to my knowledge. I had the red light a few years ago without anaesthetic and it was quite painful but I only needed one treatment. I recently had two more areas treated simultaneously , close to my eye and also just above my lip. They were bigger cancers and required 2 red light treatments 2 weeks apart and I opted for local anaesthetics. The one near my lip was very painful but I didn’t feel a thing during the treatment and recovery was a breeze both times. I agree, that bandage near the lip is quite tricky to keep dry. As well as avoiding the sun, you are not supposed to go out into the daylight for 48 hours as the drug will re activate and you effectively start a milder treatment on top of the original apparently.

  19. Can I ask who you see for your skin checks. I feel this is a priority area but can’t seem to find the right fit.

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  20. I found your site searching for a photo diary of pdt as I’m currently in research mode. Thank you! Your page is very informative 🙂
    My doctor has recommended I use effudex next winter and I really never ever want to use that product again! I had quite a lot of reactions to effudex (pain, couldn’t sleep, headache/migraine, metallic taste in mouth, upset tummy, depression/crying – and I’m not really like that) – plus the result of my skin looking really dreadful for ages. I really copped it!
    I think (maybe) that pdt might be for me.
    I’ve had a SCC removed from my temple six years back (mostly unnoticeable flap scar 26 stitches), BCCs from nostril (neat graft) & neck (6 stitches ugly scar) last year, and now am on a wait list for another BCC on my other nostril (another graft probably).
    I’m paying the price of being a child of the seventies too, with red hair, green eyes and fair skin. Really, I’ve probably gotten off lightly to date.
    Thanks again. I hope your site helps other people – it has helped me 🙂 Yvette

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  21. That treatment looks incredibly painful Nikki but so glad it’s done and the results are fantastic.
    I am paying for my teenage years spent laying in the hot backyard and going to Cronulla beach on the weekends with baby oil slathered on my skin.I had a squamous cell carcinoma removed from my face last year,luckily the Dr removed it all first go but I had 4 stitches in my face.The scar is tiny only I notice it.I also had some other skin cancers taken off my hands and legs Only basal cell ,but I was told my ancestry has a lot to do with getting them,Irish and Welsh great grandfathers on my Dads side and Scottish on my Mums.
    It’s funny how we’ve changed our thinking about the sun and tanning Pioer was looking at really old photos of me last week and she told me your skins looks yuck Nanna it’s brown and it was really brown.

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  22. I’ve just turned 62 and have nothing on my skin that needs attention. My dad is about to turn 92 and despite a life of sun and surf the same.
    But this treatment looks like a godsend. Efudix is a ridiculous process and surgical removal means they take a huge chunk. How might lips ever recover.

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  23. I had my whole face and both lips done last year. PDT treatment was a little different to yours they put the cream on in the surgery and then I had to go outside and walk in the sun for an hour with no hat on which didn’t feel right and did I burn baby burn then the cream was taken off and I could go home. My lips got infected day 4 and it was so painful I was also under a lot of stress at the time which didn’t help. No pain no gain. Now my skin looks ah-mazing and I’m so glad I did it, I agree with your advice wear Sunscreen!

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  24. Yes I have had my whole face done too!! I didn’t quite realise how much the light would stir it up. On the 2nd day I had a drs appt so drove there in my car. The pain was excruciating!! I had a hat to protect me from the sun but that didn’t help. Applied ice packs when I got home. Great result but next time I will know not to step outside the door for 3 /4 days.

    1. Oh yes… 3/4 days indoors is a must.
      Such an effective treatment.
      I did tell my specialist that he had better have got the job done, because I was never doing it again. !!!
      The 6/8 hours directly after treatment was awful.
      Wishing you never need it again also.xx

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  25. Yes…
    I had my whole done on the 4th July last year… I had previously used the efudix cream on my nose to clear up some little spots, and that was successful. However, the 6/8 week time frame for that product seemed a little overwhelming when my skin guy informed me it would be best to do my whole face…soon.!!!!
    It was about 10 days from treatment to a ‘back to normal’ face… still a little pink for a while, but the dryness, flakiness cleared in that time…
    It was horrific but I can honestly say I am very pleased with the results.
    I’d love to share my photos but I don’t think that’s possible here…
    Sunscreen everyday, even on a dull day is not negotiable now.

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