The Enemy

In the spirit of trying to educate and inform, I thought I would write a bit about ‘the enemy’ – malignant melanoma.

Prior to my initial diagnosis five years ago, I knew little about cancer, and next to nothing about malignant melanoma. What has followed since then has been quite an education. During that time, three particular instances have stuck in my mind, where it has become apparent to me that there is not enough awareness out there…

1 – In the office at work, overhearing a group of colleagues discussing using sunbeds, how nobody had ever known anyone with skin cancer, and it was probably all a bit of a scare story.

2 – Sitting in a restaurant in Canterbury (ok, so I say ‘restaurant’, it was Burger King), listening to a group of young teenage girls discussing tanning strategies for the perfect, all over, beautiful tan. At the time I was recovering from surgery, having had all my lymph nodes removed from under my left arm – I wanted to take my shirt off, show them the huge, hideous scar on my shoulder and the scar under my arm, and ask them if that conformed to their idea of ‘beauty’ (but I didn’t, so as to avoid being arrested).

3 – My line manager at a previous employer telling me how my diagnosis had suddenly made her think about protecting her seven year old daughter from the sun.

The scar from my original melanoma excision – ‘beautiful’?!

It would be easy for me to sit here, get all bitter and twisted, and moan about ‘ignorance’ – but that’s really not what I am trying to do. Before I was diagnosed I was ‘ignorant’ in terms of the risk factors I was exposed to – I unfortunately had a rude awakening. It is my hope that via this blog, and the information below, I can save at least one other person the same rude awakening.

Now there is already plenty of good information out there on both melanoma and cancer in general – so there is little point in me regurgitating all that in detail here (although I will cover a few basics). I also don’t intend to cover advanced melanoma (unfortunately where I now find myself) in any significant depth, as there is not much I can add.

The area I wish to focus on, and where I hope that my own personal story can make a difference, is around the issues of prevention and early detection. Melanoma is an easily preventable and, if caught early, very treatable disease – so a little bit of awareness can go a long way, and with any luck hopefully help spare other people from having to go through this ordeal themselves.

So here we go then…

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What Is Cancer?

Cancer is not a single disease – there are over two-hundred different types of cancer, each with its own name and treatment.

Cancer is a disease of the cells within the body. Normally these cells divide in an orderly and controlled way, but if for some reason this process gets out of control, the cells carry on dividing and form a lump called a tumour. A tumour can either be ‘benign’ (non-cancerous) or ‘malignant’ (cancerous).

A ‘benign’ tumour cannot spread to other areas of the body – but it can cause problems by pressing on surrounding organs.

In a ‘malignant’ tumour the cells can spread beyond the original area of the body, via the bloodstream or lymphatic system. Once they reach a new area of the body they can go on dividing, forming secondary cancers (known as metastasis).

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What Causes Cancer?

Just as there are many different forms of cancer, there are also many different causes – most of these causes are not fully known, but some of the risk factors that affect a person’s chances of getting cancer are known (smoking and lung cancer for example).

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What Is Malignant Melanoma?

Malignant melanoma is a cancer of the pigment cells of the skin. Melanin is the dark pigment that gives the skin its natural colour, and is produced in the skin by pigment cells called melanocytes. After our skin is exposed to sunlight, the melanocytes produce more melanin, and the skin becomes darker.

A melanoma can develop when the skin pigment cells (melanocytes) become cancerous and multiply in an uncontrolled way. They can then invade the skin around them, and may also spread to other areas of the body.

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How Common Is Malignant Melanoma?

Melanoma is the sixth most common cancer in the UK, with almost 11,800 people diagnosed each year. The number of people diagnosed is now four times higher then it was thirty years ago. It is now one of the most common types of cancer in people aged fifteen to thirty-four.

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What Causes Malignant Melanoma?

Risk factors identified for melanoma are:

  • Exposure to ultra-violet (UV) light – through natural sunlight or artificially through use of sunbeds or lamps.
  • Sunburn – episodes of severe sunburn, especially in childhood, can increase the chances of developing melanoma in the future.
  • Skin type – people with fair skin, red or fair hair, blue eyes and freckles are more sensitive to the sun, and so burn more easily, putting them at increased risk of melanoma.
  • Moles – people with lots of moles (especially over a hundred) are at an increased risk of melanoma.
  • Family history – this increases your risk, especially if you have two or more close relatives who have had melanoma. This may be caused by an inherited faulty gene.
  • Reduced immunity – people with a weakened immune system because they have HIV, or they are taking drugs to suppress the immune system, are at an increased risk of melanoma.
  • Previous melanoma (or other skin cancer) – having a melanoma considerably increases your risk of another developing.

My own experience – I will probably never know for sure what caused my melanoma, but I do fit many of the risk factors above. I am fair skinned, blue eyes, with lots of moles – I have a family history, and have been on immuno-suppressive drugs for the last eight years (for a condition called ulcerative colitis). I’ve never been a sun worshiper, but like most people have had the odd bout of sunburn.

It’s only actually now I am writing this, with the benefit of hindsight, that it strikes me how many of those boxes I tick – and that is exactly why I want to raise awareness. If I had fully known how at risk I was, and been able to articulate that to the doctors I saw, perhaps my melanoma would have been dealt with earlier, and not reached this advanced stage. It took me four appointments with three different GPs, over a period of months, before it was finally considered to be potentially cancerous and I was referred to a dermatologist.

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What Does A Melanoma Look Like?

Melanomas do not all look the same, and there are several different types. The ABCD system tells you some of the things to look out for. A melanoma may show one or more of the following features;

  • Asymmetry – the two halves of the area differ in shape.
  • Border – the edges of the area may be irregular or blurred, and sometimes show notches.
  • Colour – this may be uneven. Different shades of black, brown and pink may be seen.
  • Diameter – most melanomas are at least six millimeters in diameter.

Melanomas can appear on any part of of the body, but are most common in men on the torso, and in women on the legs.

My own experience – unfortunately my melanoma was fairly atypical in appearance – which is one of the reasons it took me multiple GP visits before being referred to a dermatologist. Each time at the GP I was asked if it itched or bled – the answer was no, and that seemed to be enough to signal it as nothing to worry about. At one of my appointments I was given fungal foot cream to rub on it for a month. It was only the third GP I saw who recognised the potential danger and got me in to see a dermatologist the very next day.

I distinctly remember sitting in the Dermatology waiting room, looking at the posters of melanomas on the wall, and reassuring myself that whatever was on my shoulder looked nothing like them. The dermatologist acted very professionally and promptly and took a biopsy – but I think even she was surprised that the results came back as positive for melanoma.

I’m not trying to get all bitter about the time it took for my melanoma to be diagnosed (that doesn’t really achieve anything). Where I am going with this is to urge you to take a proactive approach should you have any concerns about an unusual or changing mole. As such I have decided to list a few ideas to aid early detection, some of which in hindsight might have helped me:

  • Act quickly – if a melanoma is caught early it is very curable. Don’t delay, even out of fear of hearing something you might not want to hear (which is a very powerful instinct – but it’s far better to be told sooner that you have cancer that hasn’t spread, than delaying only to hear you have cancer that has spread).
  • Familiarise yourself with the risk factors for melanoma – and how many apply to you. That way even if your mole looks benign, knowing you have a family history might just prompt your GP to make that referral to a specialist as a precaution.
  • Have confidence in your own convictions – if you are worried, but your GP dismisses your concerns, get a second opinion from another GP. Early diagnosis is far too important to spare your GP’s feelings, trust me!
  • Take photographs of the offending mole at various points in time – that way you can demonstrate to your GP how it has changed – because frankly, they won’t remember what it looked like a month ago.
  • Chase appointments / referrals – my referral letter from the second GP to the third GP (at some kind of local ‘super GP’ clinic – the one who finally spotted the danger and got me into Dermatology the next day) went missing, so I spent a month waiting for a letter that never arrived. Don’t wait assuming it will come – follow up.
  • Do a ‘mole map’ – even if you don’t have a mole you are concerned about right now, if you fit any of the risk factors above, take a series of photographs of your whole body – from every angle (face, neck, arms, legs, shoulders, torso, hands, feet… just everywhere basically). Then keep the photos, forever. The idea is that this provides a baseline to examine any future changes against. If you develop a new mole, or changes to an existing mole, you can immediately compare against this baseline, and save yourself and your GP months establishing if the mole is genuinely new / changing or not. I had this done at the hospital after my first diagnosis, and it is often used as a comparison in my Dermatology appointments – but there is no reason you can’t do this at home yourself (ok, so you might need another person, or a tripod and camera with a self-timer).
  • Have someone watch your back – there is no way I can see my back in enough detail to spot a new or changing mole. Enlist someone to help you.

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Stages Of Melanoma.

The stage of a melanoma describes how deeply it has grown into the skin, and whether it has spread. The tests used to diagnose melanoma will provide some of this information. It is important to know how deeply a melanoma has grown into the skin, as this will determine:

  • The kind of treatment required.
  • The likely risk of the melanoma coming back after treatment.
  • Whether tests are required to see if the melanoma has spread into the lymph nodes.

There are several different staging systems that can be used to describe the progression of melanoma. For my purposes I am going to use the ‘number staging system’ – however within that system there are many sub-stages, so I am going to list a summarised version for illustrative purposes only. Full details on the number system, and other systems, can be found on the Cancer Research UK website.

  • Stage 0 – The melanoma cells are only in the top surface layer of skin cells, and have not started to spread into deeper layers.
  • Stage 1 – The melanoma is less than 2mm thick – it is only in the skin and there is no sign that it has spread to lymph nodes or other parts of the body.
  • Stage 2 – The melanoma is between 2mm and 4mm thick – it is only in the skin and there is no sign that it has spread to lymph nodes or other parts of the body.
  • Stage 3 – The melanoma has spread into lymph nodes near the primary tumour.
  • Stage 4 – The melanoma has spread elsewhere in the body, away from where they started (the primary site) and the nearby lymph nodes. The most common areas for melanoma to spread are the lung, liver or brain, or to distant lymph nodes or areas of the skin.

In the UK most melanomas are early stage one and are completely cured with surgery. Most stage two tumours can also be cured with surgery.

My own experience – when my melanoma was first diagnosed, it was classified as ‘stage one’. In most cases a thin melanoma like this would not have spread beyond the skin and would have been completely cured by surgery. I don’t know why mine didn’t follow ‘the rules’.

All I can say here is that it pays to be vigilant – without being paranoid (easier said than done!). Being discharged from hospital and told you are ‘all clear’ is just the start of another battle – the battle against the constant fear of recurrence. Now the vast majority of people discharged after a stage one melanoma will never see it again – so I don’t want to unnecessarily alarm anyone with what happened to me. But what I would say is just stay vigilant, and if you are worried about anything, act sooner rather than later.

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That’s as far as I’m going to go with this page. As I have already mentioned there is plenty of information out there on all stages of melanoma (early to advanced) – but it is around prevention and early detection that I feel my own personal story can add value to that information, and raise awareness.

So in summary – avoid the risk factors that you can, be aware of those that you can’t, and stay vigilant for changes to your skin.

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Information taken from the following websites:

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(page last updated 7th May 2012)

10 responses to “The Enemy

  1. Caroline

    Wow what a lot of good info you’ve put down. That’s wonderful. Well done you. I have had a mole check recently and getting a couple cut out….. So that’s good. Drs not worried but is happy for them to be taken out, safer.
    Good work Ben, some really helpful guidelines there. You’re so right about the following up bit. Definitely chase us your dr/surgery.
    Keep up the P.M.A!!

  2. Claire & Phil Leslie

    Thank you for all this info Ben, it’s invaluable. With everything you’re going through at the moment, thank you so much for taking the time to share all this vital information which will definitely help others. I hope the last 2 sessions go well and that you will be feeling the benefit very soon. xxxx

  3. Anna F

    Hi Ben. This is so useful as a mixture of facts and personal experience. I’ve worked as a GP and having access to a resource like this for at risk patients is really helpful. It also increases the chances of somebody who is concerned and doing a bit of a Dr Google check to find some relevant and useful information.
    Having been a GP I want to add that nobody minds second opinions. We are all finding a balance between reassurance and prompt action and as doctors we also all have different experience of seeing various complaints. If something is worrying you, even if we are genuinely convinced there’s no problem, keep talking to us. It may be we just need to explain something better or it may be we can do something to make you feel more convinced. Or we’ll get a second opinion. I know some GPs are more difficult than others and I know from our side how rushed we are and how many ‘worried well’ we see. But if something is worrying you, it matters, so just keep asking. At the end of the day we all chose medicine for positive reasons. Find the doctor who you connect with and together come up with a plan, e.g. if it’s still worrying you in two weeks come back and we will….. You can trust us and I think it’s important people don’t feel they have to second guess everything we say but some things are difficult to pick up initially and as I always tell patients, you know your body better than we ever will so if you have questions, keep asking. x

  4. jayne Gore

    Hi Ben, as a fair skinned, blue eyed person with loads of moles I have found this information very informative and will definitely be sorting out the mole map – look out hubby you are going to be the cameraman ! You are truly an inspiration to all – thankyou so much. Jayne G

  5. Hi Ben, Sally & Saskia,
    Working in the clinical trials industry myself, it may be useful to keep an eye on clinical trial pipelines for patient recruitment into malignant melanoma studies. May I suggest viewing websites (www.centerwatch.com) and (www.clinicaltrials.gov) for more information and potential recruitment . Please feel free to call us anytime if we can offer more information. Stay strong and positive, we’re all behind you!
    Matt & Shell

  6. Julie Hands

    I am too a fair haired, blue eyed covered in moles, so thankyou Ben for this information. All the very best, ;lots of love to you all.xx

  7. Pingback: A year later | Me & My Unwelcome Visitors: A blog about living with melanoma

  8. Margo Nelson

    Thank you for all of the information! It’s more than my dermatologist gave me. I had a melanoma removed from my shoulder last month, and I haven’t even been advised to wear sunscreen in the future! Maybe they think that’s just obvious. But I sure would appreciate a little more info from my doctor.
    What I found very interesting about your story is that you were concerned, and yet your doctor blew off your concerns. I had a similar experience, the doctor didn’t want to biopsy the one that turned out to be melanoma. She insisted that it didn’t look like anything to worry about. But she was taking other moles for biopsy! Why blow of the ONE that I was concerned about? What if I’d backed down when she said it was nothing?
    I found your site because my “dissolveable” sutures are coming out, my body seems to be rejecting them, and I was googling melanoma scar photos. Apparently not such an abnormal occurrence!

  9. Sally

    Hi Margo,
    Thanks so much for reading Ben’s blog and for your feedback. I’m really glad it was helpful, though really sorry, and frustrated on your behalf, that your GP let you down as Ben’s did for so long. My advice is to keep on it – switch GPs if you don’t feel your current one is listening to you. Same goes for consultants! And stay vigilant – take any mole change seriously and go and see someone about it. Sounds odd, but take photos, and make a note of size/diameter so that when you go to your GP you’re armed with evidence of how they’ve changed.
    My very best wishes,
    Sally

  10. Gillian

    Hi Ben, Thank you for your story. I too am a melanoma survivor of five years now with a stage 2melanoma removed. I completely agree and would reinforce the fact that if you are unsure of your moles don’t hesitate, get them checked. My GP was very good it was the pathologist I had issues with as they misdiagnosed mine initially and it wasn’t until the mole grew back and was removed a second time that my dermatologist informed me that it was actually a malignant melanoma and I had it for two years! You can imagine my thoughts, I had the wide local excision and thankfully to everyone’s surprise it had not spread into my lymph glands but I live in fear that one day it will rear it’s ugly head somewhere in me.
    I think the information you have offered will make a HUGE impact and clear up some of the ignorance and lack of awareness about this silent killer. My thoughts are with you and thank you. Take care of yourself.
    King regards and all the very best wishes,
    Gillian

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