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Skin Cancer – My Journey

The background

Skin cancer is unusual, it is not like any other cancer in that you are never sure when it will return or where; the skin is the largest organ in the body.

My journey stated way back in the 70s and 80s when we were told by medical experts it was healthy for you to get a good tan on your body. I lived in the Middle East for six years and took full advantage of the sun. The following years were not much help either, the Caribbean and the Far East. My work took me to these places and I spent as much time as possible sun bathing.

Around 2004, I started to get small scaly patches on my head (very thin hair approaching baldness). I went to my GP who said it was nothing to worry about and just apply some skin lotion to soften them. In 2005 while on holiday in Spain, I had a small lesion on my head that hurt to touch and was itchy.

I saw a doctor who straight away sent me to a dermatologist. It was of course skin cancer, a basal cell carcinoma. She was very good and treated several other spots by freezing them.

The treatment

When I returned to the UK, I handed the biopsy report to my GP who then booked an appointment with a dermatologist for me. Some sixteen weeks later I saw the dermatologist who said she could find nothing wrong and agreed with my doctor that all that was needed was to apply skin lotion and wear a hat. (I always wear hats).

In 2010 another patch of what would prove to be actinic keratosis appeared and I again went to the GP who simply scrapped them off with a scalpel and said to continue to use skin cream and wear a hat, nothing to worry about. At this point I started to research actinic keratosis and skin cancer. The next few years were quiet.

In 2015 I had a small lesion again that kept bleeding and would not go away. It was painful to touch and itched. My new GP, the old one having retired, said he thought it was a squamous carcinoma and arranged an immediate appointment at the hospital. For some strange reason, the hospitals in East Yorkshire do not allow you to see a dermatologist first, you see a plastic surgeon. The plastic surgeon agreed it was a squamous carcinoma and said she would have to cut it out and patch in a skin graft.

Listen to the experts?

This worried me a bit but cancer is cancer and you listen to an expert. Luckily I did not need a skin graft and the biopsy revealed it was indeed a squamous carcinoma, I was told again to wear hats and apply skin lotion. My GP told me to use factor 50 sun block, again something I always do.

In 2016 I had two large lesions appear that would not go away, these were removed and turned out to be basal cell carcinomas. Again the plastic surgeon I saw wanted to apply skin grafts but the operating surgeon said it was not necessary.

In 2019 (March) I saw the reappearance of several areas of actinic keratosis and my GP booked me another appointment with the hospital. This time I stood my ground with the plastic surgeon and demanded to see a dermatologist. In June, I saw a dermatologist who offered me several options on treatment. I elected for Photodynamic Therapy using Metvix and three days later it was applied to my head by a specialist nurse.

I spent two hours sitting out in the sun and then over the next few weeks, my head erupted into a mass of large red areas. They did itch but it was bearable. I had a review by the nurse who said it was working well and to come back in September for a second treatment.

Cancelled appointments

Now I fall into the dreaded NHS problem; cancelled appointments. I had seven, yes seven appointments cancelled and remade within one month. I ended up seeing the nurse in October when it was too late for a second treatment. I had of course telephoned earlier and pointed out the problem but they only had three specialist nurses and two of them were off sick and the third was on annual leave.

As it was too late for treatment by Photodynamic Therapy (not sufficient daylight to activate the chemo cream) I was offered an eight week course of Efudix. It was eight weeks as some new basal cell carcinomas had appeared and she thought the cream may well get rid of them as they were small.

I was told to treat one half of my head first as there would be side effects. The heat of my head had a reaction with the cream and all of my head started to break out in red patches so I applied the cream to the whole head. (Still under the recommended maximum area to be treated according to the manufacturers instructions).

The cream ran out after five weeks so I saw my GP who said I should have used it for only four weeks, Monday to Friday. I questioned this and he checked with the dermatology department at the hospital who said it should have been six weeks. Confusing to say the least.

I had a follow up appointment with the specialist nurse booked for mid October but when I arrived at the hospital I was seen by a dermatologist who asked me why I had arranged an appointment so soon after treatment and to come back in the New Year. I do not book appointments, the hospital do this. She did not even examine my head, just wrote down some notes and that was that.

Conclusion

If all of this sounds confusing, think how it feels to me. I am not uneducated when it comes to medical issues and my wife was a registered nurse (retired and an old school Matron). I have spent many months reading up on skin cancer and treatment and can understand what the “experts” at the hospital are talking about.

I purchased a high resolution, high magnification dermatoscope/microscope (up to 1,000 X magnification) that can be plugged into my computer so that I can inspect the areas of concern and take photos of them, viewing them on an ultra high definition monitor. I have studied pictures of actinic keratosis, basal cell carcinomas and squamous carcinomas on the internet and can tell the difference between these and healthy skin.

When I told the operating surgeon about this in 2016 (he had asked me how I was and had anything changed so I told him and showed him the pictures) he became very short with me stating that I was not a surgeon and could not possible know what I had. A different surgeon carried out the operation to remove the carcinoma again without a skin graft.

It is almost as though the surgeons want us to remain ignorant and simply be grateful for what they do. This is my body and I am aware that I have cancer and want to know as much about it as I can. I am not prepared to let my head become a patchwork quilt as the plastic surgeons would have and provided I can obtain the correct treatment on time, this is not necessary.

The latest round of Efudix seems to have attacked and removed nearly all of the actinic keratosis and basal cell carcinomas. There is one small lesion remaining which I am monitoring as it is raised, slightly blooded and itchy. This has the markings of another squamous cell carcinoma but I will keep my eyes on it and if it gets any bigger before my next appointment (Jan 2020) with the dermatologist, I will be straight round to my GP.

From all of my problems, I understand that…

Skin cancer is incurable. It is caused by prolonged exposure to the sun (ultra violet) and cannot be reversed.

Precautions can be taken by applying sun block, always wearing a hat and long sleeves and constant checking of the skin for any new lesions. At the first sign of new lesions, go straight to your GP and insist on treatment.

The NHS is a wonderful institution which unfortunately is a bit of a lottery. In our neck of the woods, the management of it seems to be in the hands of receptionists and appointment clerks. They control who sees who and when. Even the surgeons and doctors have said that appointments are out of their hands and down to administration.

However. I have accepted that I have skin cancer and it seems to be quite bad. At seventy two I have lived longer than my father or grandfather. I have led a good life and with care and luck, I can squeeze a few more years out of my body.

It is a shame that there are ways of dealing much more efficiently with skin cancer but my own opinion is that as most of the surgeons and dermatologists have never had skin cancer themselves, they cannot understand what we all go through. Dare I say that surgeons will always want to cut and stitch as this is their living. If we could all be treated by the use of chemo creams or other non invasive actions then they would be out of a job.

Just my own observations.

Footnote:

Once referred to the hospital, the GP no longer has the final say. The hospital take the lead and only they can authorize the issue of chemo creams such as Metvix or Efudix. You are at their mercy.

Metvix:

Metvix is a one application, very simple treatment with very few side effects. It attacks the pre-cancerous cells leaving healthy skin alone. A little painful in the red areas and itchy but after three or four weeks, it all goes away. Sunlight is required to activate the cream but research shows that here are much better ways using artificial light at the right frequency, intensity and duration. (Also much cheaper than building a £6,000 plastic bus shelter outside the dermatology department that can only be used during certain times of the year). Artificial light can be controlled much better than daylight and used all year round.

Efudix:

The application of Efudix depends on your dermatologist. I have read the manufacturers instructions, the British Association of Dermatologists recommendations and many of he well know authorities on the subject. Treatment varies from four to twelve weeks depending on the patient.
Efudix is a pain, literally. Again, like Metvix, Efudix attacks the pre-cancerous cells leaving healthy cells alone. It has also proved useful in treating early stage basal cell carcinomas. For the length of the treatment the red areas are painful to touch and itch like mad. After about two or three weeks, the skin starts to flake and fall away and healthy skin is underneath.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SkinCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Nina M moderator
    2 weeks ago

    Hi @Tony-B, just wanted to say I really appreciate your detailed and unfortunately very relatable story. We do hear somewhat often about folks having to insist on a spot being biopsied or arguing for or against treatment, but you really had all of the above multiple times. Your learnings on how to be your own advocate are crucial for folks to know. It takes a lot of work, but can make all the difference in getting the results you want and deserve. Thanks for posting this and glad to have you here!

    – Nina, SkinCancer.net Team
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