Has anyone received photodynamic treatment on the face?

Hi Greyowl

I don't have any experience with photodynamic treatment so I've had a look through the group to see if I can put you in touch with some people who have.

I've found this post from carrielou and this one from ShantaG, which are both from December 2019, and finally this one from Nankeen which is over 3 years old. These were the only three which mention having this treatment on the face. You could have a look at these and respond to any of the posters you think might be able to help you further.

Wishing you all the best with your treatment.

x

As there isn't much information about PDT here I thought I would add an update on my experience in case it was of use to anyone coming to the site.

Just to recap, the reason I was scheduled for photodynamic treatment was because I have a bcc on my face, which was biopsied and found to be superficial bcc, and is bigger than the biopsy site so further treatment is required. Superficial bcc are less common on the face - often if you read about treatment for them it is on another part of the body. In these other areas there are lots of options, unlike other bccs, because they lie so near the surface - so they can be treated with freezing, and creams. I learnt that freezing isn't a great option on the face because you would need a double freezing treatment, which would be scarring, and is not so very efficient. The reason I couldn't try a cream is because it is near my eye and the consultant thought that unsafe. So the only options in my case were surgery, or PDT. (If you see other posts by me you will see I originally saw another NHS consultant who was going to go ahead with both the unsuitable forms of treatment. I was glad to have objected and get better advice.)

I didn't find much about PDT for bcc on the internet. A lot of what I read was about PDT for AK, so the information and images were not what I am experiencing. For bcc I am having two targetted treatments of 9 minutes each, a week apart, and the cream is left on my skin for 3 hours (whereas for AK it is one treatment of 16 mins on a wider area and the cream is left on beforehand for a shorter period). You can read about the process everywhere - you have the area scraped, then they add the cream which you leave on for a period, then they shine the red light on it.

I have had one treatment and it all went very well. I was concerned about pain levels for the 9 minutes of red light - I read that 58% of patients find it so hard they don't come back for the second treatment. They advise you to take a painkiller - I took the max I could, and I took co-codamol. The initial scraping and putting on the cream was painless. The red light treatment was uncomfortable, and occasionally a bit like having needles stuck in you, but they sprayed water on my face when I indicated this and that helped enormously. Overall it was bearable and not traumatic. I felt a bit shaky afterwards and wouldn't have wanted to drive home.

Afterwards my face felt hot, and I had a bandage over the area that had been treated. I learnt that it was only that area that has to be kept out of the light for two or three days, so unlike treatment of AK where it is hard to cover up I was able to just keep the bandage on. I felt my whole face was a bit hot though, and maybe my eyes a bit sensitive - I wore dark glasses indoors the first day. There wasn't any pain on my face.

The main side effect of the treatment was a permanent headache that paracetomol didn't shift, and a feeling of nausea. I had this for two days, and then it just went. On the third day I took off the bandage and saw I had dark red area on my face with a small bleeding area in the middle. I now have no bandage and just put vaseline on the red area, which might blister. So from day three I feel fine. I am going back to have the whole thing done again this week and I am hoping I will just go through the same things again, but if it is different I will add to this thread with that information.

My impression at the moment is that this was a very good way of dealing with the bcc and much less trouble than using efudex. Of course it will be three months before I know if it has worked, and if it hasn't then I will have to have surgery, but the success rates are quite high for PDT so I'm hoping this will deal with it.

Hi Greyowl

A really big thank you for taking the time to come back and tell us how your photodynamic treatment has gone so far. You are the first person who has had this treatment who has come back to share their experience and it will be so useful for people coming to the group in the future looking for information.

I'm please to read that the treatment has been manageable with the exception of having a permanent headache, which can't have been at all pleasant!

All the best with the next treatment

I decided to update this thread now I have had the second (final) treatment, because it turned out to be rather different.  I was assured it would be much the same, but it wasn't. A week after the first treatment my face was painless and just had a slight pink blodgy area. The nurse commented this was 'inflamed', and this time she put the cream on a wider area, covering the pink area. I don't know if this is usual, or if this indicates they hadn't applied it wide enough on the first go.

The treatment was unfortunately a lot more painful. It's bearable, obviously, when you know it's for a short time. I think 5 minutes of the 9 minutes was painful. I talked all the way through it to try and distract my brain. At the end of the 9 minutes it continued to be very painful for about three hours. I suppose this was the cream still being activated by the light treatment. I had again taken maximum prescription co-codamol (someone else's! they didn't supply it to me) but I still had this level of pain. I found applying frozen pads to it really helped a lot.

The good news is that the pain subsided almost completely after a few hours. Like last time I had nausea and headache for the next few days - this is day three and it is a bit better than yesterday. Last week the worst of it was over after two days, but it still lingered for most of the week. Today I took the bandage off and I have a large dark red area on most of my cheek, quite angry looking. It feels sore obviously, but not painful. My guess is that this will take longer than a week to heal.

I wish the NHS would give you a better idea of what to expect. It seemed logical to me that the second treatment would be more painful than the first but I think they didn't want to suggest this in case it made it worse. Also the first week my face was easy to manage but this time it will be harder and I'm not due to see anyone again for three months, so I hope it all heals ok.

I wouldn't want to discourage anyone from having this treatment. For me at the moment it is still seems preferable to have this violent reaction in a short time, and know that it is healing from now on, rather then the slow build up of the cream.

I'm happy to add this information to the forum, knowing how helpful it would have been for me to know of someone's experience. I wonder why the patient's experience isn't described by the treatment-givers. For instance, although the nurse said to me afterwards it was common to get a bad headache, and sickness, this was never mentioned in the written information given to me as a side effect - that only described what would actually happen at the treatment site, and that not very clearly!

A final update on this. The recovery was incredibly fast on my face. The side effects lasted about five days - headache and nausea - and then my face healed within another four days after that - quite amazing. Now you can't see I had anything wrong with my face at all. I would definitely recommend this treatment, if it works (fingers crossed).

That's really great to hear that the recovery has been incredibly fast Greyowl. I'll be keeping my fingers crossed that when you report back in 3 months it's to say that you need no further treatment.

Hello Greyowl,

I also have a basel cell carcinoma on my face under the eye, the hospital want to remove it useing surgery, but have said there is a high risk that the tear duct will be destroyed resulting in a weeping eye which they would be unable to repair. I asked them about photodynamic therapy and was told they do not do this treatment at my hospital Torbay on the NHS i would have to go private. Could you tell me if your treatment was done on the NHS and which hospital it was ?.

Hello Datura,

Your post is a bit surprising - I had my treatment on the NHS in Torbay! To add to my suspicions, you may see that I had problems with seeing a locum consultant at Torbay whose advice was totally incorrect so I do wonder if that is why you have this advice. It might be the case that your carcinoma is much closer the eye than mine was, and that is why they can't do the PDT, but then they should say so.

Do give more information here, or if you prefer to me in a private message (though I don't know how to do that yet!). I would be happy to help if I can.

Just to add - you don't say but I assume your carcinoma is a superficial bcc? Because if not a superficial they probably wouldn't bother with the PDT because it wouldn't be very effective.

Hi Greyowl,

So many thanks for the information you have given me. I have now contacted the hospital asking why i was told PDT was not available at Torbay but am now aware it is. As you pointed out PDT is used for superficial BCC and i understand is the best treatment, but i now suspect my BCC has gone deeper which would not surprise me, as in September 2018 i had a small OP on my right eye to clear a blocked tear duct a year previous had the same on the right eye no problems. A month following the left eye OP i told the eye clinic that something felt wrong near the eye and pointed out the small pink mark below, they thought this was caused by the needle puncture during the Op.I then developed uveitis in the eyes and for the past two years have had three monthly visits to the eye clinic, each time pointing out the pink now crusty mark and that something not right, Was told just keep using steroid eye drops. Two months ago i had to visit dermatology for a mark on my leg a nurse looked at my face and said the mark needed to be investigated which confirmed BCC . I now suspect that for the time it has been there it has gone deeper which would not be cured by PDT only surgery. I still do not understand why PDT was not available for superficial BCC or otherwise. I will let you know of the hospital reply and outcome. Again many thanks, and hope you are fit and well.