Joining the Aldara group - facial BCC

FormerMember
FormerMember
  • 35 replies
  • 24 subscribers
  • 32787 views

Hi, 

I'm joining the Aldara group :) To my horror I have been recently diagnosed with a BCC (small nodular) on my face (nose) and I've chosen the Aldara cream hoping that it will work given the small size of the BCC (3 mm).  I think it's a good non surgical option. I'm scared of surgery and of being left disfigured, so I chose Aldara as it seems to be best compared to  the other non surgical options (freezing and PDT).  I felt that, even if it will not work or the effect will be incomplete, it can be a good adjunctive therapy before surgery, as at least it will shrink it and activate the immune system so no abnormal cells are left behind. 

I am due to start on it at the end of the week and will update the progress/or the lack of it here. 

I have few questions for you guys, those who managed to complete the 6 weeks/ or undergoing treatment now:

-  Is there anyone that had more positive experiences with Aldara? Is this treatment always causing horrible side effects or it can be manageable depending on the surface of skin affected ? If only a small area is treated, would the redness/scabs extend to the whole nose? 

- If the area affected is the face, and you had side effects on the moderate severe spectrum (like scabs/crusts on face, not talking about the flu like symptoms),  how you managed around work ( was off work necessary at times  if being in a front line job ?) 

- Is the original lesion completely off at the end of treatment, if it worked - with new skin underneath a scab? Or it's still there as a flattened mark? In the short - medium term, how you have found the treatment?

- How can you find for sure if the treatment worked? Is it just on clinical aspect/clearance and dermatoscopic aspect?

- Has anyone heard about OCT (Optical coherence tomography) for skin being done in UK, and if so, where?  I know it's there somewhere but I cannot find more, best provider and how much it costs. I feel there should be more information about it on relevant websites like bad/pals and nhs, and it's a shame there isn't much about it (talking about PATIENT OPTIONS AND ACCESS TO TREATMENT)...This is a non invasive diagnostic tool saving your skin of biopsy /surgery. It can be extremely helpful before and after treatment, showing how deep a lesion is and if it was completely cured after. 

-  Has anyone heard about any other new treatments offered by NHS?  On the alternative treatment side, has anyone tried any Frankincense or Tea tree essential oil with any benefit at all ? 

Thank you for having me in the group and thanks in advance for any answers. Take care, speak soon.

SG X

  • Hi and welcome to the skin cancer group

    I don't have any personal experience with Aldara but there are quite a few people in this group who do.

    I'm going to tag and into this post as they have just finished a course of Aldara and should hopefully be able to tell you about their experiences.

    Let us know how you get on

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • I am right with you.  I have been debating on using Aldara or doing Mohs on the small superficial basal cell cancer on my nose.  The reviews of Aldara on the internet freaked me out but I decided to try it anyway.  So far I have used it 2 nights.  My throat didn't close up, I didn't have seizures or convulsions and my whole face hasn't swollen up.  In fact so far I have had no reaction at all.  I only used a tiny amount on the lesion and got up at the crack of dawn to wash it off after 8 hours.  I am supposed to use 5x week for 6 weeks.  I guess time will tell.  If I have any serious reactions I plan to quit it and do the Mohs.

    Best of luck to you and let me know how it works for you.

  • FormerMember
    FormerMember in reply to latchbrook

    Hi Shanta G, I used Aldara on a bcc on my arm. It’s not pleasant in as much as the scab was itchy, sore etc I was told by my dermatologist that my local reaction was severe.I didn’t really get the systemic reactions that some people got and for me I would use it again. I also have had a bcc excised on my nose tip with a possibility of recurrance due to narrow margins, I asked my dermatologist if I could use Aldara should it recur but unfortunately he said no I would need MOHs, I only say that to let you know I would definitely consider it if it was me but you will see on here some people have been badly affected. I was told by my dermatologist to use only a pin prick amount of cream (and have since read that reactions are worse the more amount of cream you use, but obviously follow your dermatologists advice) . I used the absolute tiniest amount to just cover the lesion and a small amount of healthy skin. 
    My BCC on my arm is gone, I have a faint pink mark still where it was and where the outline of the cream ended. I was given Fucidin H cream to use after the Aldara which helped to settle everything down. I have been told the mark will go. My nose has also healed well but I have a slit in my nostril. from the scalpel I would rather wasn’t there and wish I’d had the chance to try the Aldara ( a different dermatologist did my nose) Also I might have been lucky as the skin on my arm is different to other places where people have been badly affected. But in a nutshell yes for me I’d use it. 

  • FormerMember
    FormerMember in reply to bbecca14

    Hi Becca thank you for your response, I am sorry you have it too - we are in the same situation. I will start my treatment Friday night after work. I will update here how it goes, perhaps this will help others in similar situations. 

    The reason I want to try the Aldara is that is makes MEDICAL SENSE. It is your own immune system that will help you heal and erradicate the abnormal cells.

    It depends on how you react to it. 

    After I'll complete the treatment, it will be checked by dermoscopy if cleared, however this can give false positives and negatives as well, dermoscopy alone does not have 100 % sensitivity and I intend to use Confocal microscopy (scanning) which can see more in depth than the normal visual tests do. I just found a clinic in London doing it, it is not even expensive. It will give me the peace of mind, it will tell with certainty if I need further surgery or not after treatment and I can go for regular checks after, saving me from unnecessary biopsies. 

    Best of luck and please share how it works for you. I would like to update with my results every day. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Magic, thank you for sharing this, it's so good you are  well and it worked.

    Could you please share after how long the BCC was gone? It was gone by the end of the 6th week? After the scab fell off? How big was the BCC and how big the Scab itself. 

    I do apologize for asking...it is because I am scared of the side effects which are unavoidable and because the location of my BCC is on the nose. In this case I am trying to find out how big of a reaction I may have.  I am in a public facing position and if I look disfigured (plus the distress caused by the diagnosis and treatment) it may be impossible to go to work like that.

    As I said in the previous post, if Aldara does not work, or not fully, that can be checked by non invasive in depth microscopy tests (Confocal, or Optic tomography) to save your skin from repeat biopsy, then surgery, then again surgery if the first surgery did not work. 

    And, although it may sound undesirable or not indicated (and the Aldara treatment is difficult ) some have repeated and went on a second course if the first failed. There is nothing that can stop you doing that, provided there are no systemic effects (sick, flu like or other immune problems)

    SG

    X

  • Hi Shanta.

     I had Mohs surgery on another spot on the side of my nose 13 years ago.  It took 2 passes but the doctor was able to stitch it up with 7 stitches and you can't see any scarring.  This one is in a more vulnerable place (side tip) and I don't see anyway I could have Mohs without some sort of reconstruction (graft or flap) so I was very adamant about wanting to try the Aldara first.  If the Aldara doesn't completely eradicate it I hope it will at least reduce the size so if I end up having Mohs it won't be as radical.

    I agree with you about Mohs.  It is extremely nerve racking because you don't know how much of your nose they are going to remove and you have no control over it.  If I was guaranteed the outcome was going to be the same as 13 years ago I would do it again, but I met with the Mohs surgeon and he told me he doesn't think he would have to cut out a lot but he doesn't know till he gets in there.

    The Mohs surgeon is on board with my Aldara treatment (although he said his first choice would be surgery).  My dermatologist prescribed the Aldara and she is having me come in during week 3 to see how things are going and then wants to see me 4 weeks after treatment to see if it worked.  I live in the US and haven't heard of Confocal microscopy, I will ask about it.  Frankly I would not be opposed to having another biopsy after I am done with the Aldara to make sure it is gone.  

    I will try to update my Aldara progress daily too.  Let's hope we both have success with this.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Magic, 

    Sorry I forgot to ask the most important question. Please, please could you tell me by what day you started to develop a local reaction to Aldara and when it became severe? Is it by the end of first week, or the second? Or just few days?

    Many thanks, take care x

    Shanta

  • FormerMember
    FormerMember in reply to FormerMember
    [deleted]
  • FormerMember
    FormerMember in reply to FormerMember

    Hi I finished my treatment with Aldara 3 weeks ago - one week early as my reaction was so bad. The systemic side effects were awful - after 3 days of use I felt as if I had full blown flu along with constant nausea and headaches. This only got marginally better after about 3 weeks. I think I went out about 7-8 times in 5 weeks, 3 of those were to dr/hospital. 

    As for the skin skin reaction it was not too bad at first, just sore and itchy. However the lesion by week three has grown to almost the size of my palm (the original size of my BCC was about half the size of my little finger nail, if that). This developed into an open sore, which was damp, oozing yellow stuff and bleeding. My go suspected it was infected, it was certainly inflamed, so I had 2 bouts of antibiotics. The lesion was not just sore, it was painful as well. 

    I would not use Aldara cream again. However, as you may have gathered, everyone’s reaction is so individual you cannot predict how you will be effected. Now I know I would make another choice. But your reaction may be very different. It’s a difficult choice to make - I had blithely assumed my side effects would be easily managed and overcome, but was very mistaken. It was a horrible experience, just wish I had saved myself 5 weeks of anguish and pain and gone for surgery instead. 

  • FormerMember
    FormerMember in reply to FormerMember

    I hope you're well now. It sounds like it's a battle to go through this treatment  but still going to try it. You have to be very determined to stay on it and compliant. I don't see how I'm going to be able to go to work feeling and looking like that. I'm going to definitely need time off.