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21
May
2008
Melanoma; it’s a puzzle with peices missing. I’ve thought about this one long and hard, what if UVB doesn’t matter? Let me entertain yet another example of where we might be going drastically wrong.
“Most sunscreens do a good job blocking UVB, but fewer sunscreens filter out most of the UVA, so they do not help to prevent the beginnings of melanoma formation … The precise wavelengths of ultraviolet that contribute to the formation of skin cancer still need to be sorted out.” Source
We could be getting damaged melanocytes without the sunburn, right so how can you get skin cancer without being sunburnt? Well this question has never been asked. Nor has the “stay out of the sun between 11am and 4pm” bit of sunsmart been challenged.
UV index varies
I’ve noticed that peak UV hours and the times where I burn are after 4pm and before 6pm, not only the hottest part of the day but also what’s to say the UV index isn’t lower at 12pm because of cloud cover and greater at 6pm because of clear skies?
UVB might not be doing the damage
There are three types of UV radiation, and each type bassically vibrates the skin more or less. UVB is often connected to the burning effect the sun has on skin general rule is UVB = burning. Even if you get factor 50 sunscreen, SPF only measures effectiveness against UVB radiation not both UVA and B. UVA is often thought to really only age the skin and thus sunscreens have been utterly useless against UVA, but isn’t cancer linked to the ageing process?
Still we think UVB triggers most melanoma’s, but how can this be if most people with melanoma admit to making good use of sunscreens? UVA protection is measured by the star rating not the SPF and the star rating is really only a recent introduction and Ambre Solair’s UVA photostable filters have only just made it from Europe to the USA.
Sunscreens never protected against melanoma?
What if in the 1980’s and 1990’s we were told sunscreens would protect us, but it turns out that in fact it’s UVA which triggers melanoma and thus the protection we thought we had, simply never existed and still may not exist? Some retailers don’t sell lower than SPF 15, but what if it’s SPF 30 and still UVA rating of 1? Isn’t that also as bad as stocking SPF 2?
What if you can get melanoma skin cancer without a long history of sunburn, ok it is a bit far fetched, a lot of people did burn most of the time by accident and without intending to. But what if you can damage your skin even if you don’t burn, if you are genetically unable to produce melanin? What if it turns out UVB is attributed to non-melanoma and UVA to melanoma, suddenly you would need to advise people at risk of melanoma to not rely on SPF as a guide but the star rating.
Let’s get sunSmarter?
Everything you know is wrong, everything I know is slightly less wrong and everything they know is really wrong, so let’s re-write this. sunSmart needs to get smart about the UV index, for instance it might be safer to go out at 12pm under cloudy skies than it is to go out at 5pm under clear skies. so the 11am - 4pm curfew needs chucking out in favor of words on suncreen bottles explaining the UV index, what it is and how to check it for your location.
sunSmart also need get smarter about the advice given out to people at risk of melanoma and non-melanoma, each risk group needs different messages not the same messages and I was pleased to see that at least that bit of my campaign got through to Cancer Research UK.
Re-write the rules!
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19
May
2008
Owh my back, I should be used to it as I do the flickr meets every two weeks! Walk for Skin in Sutton Park went well, was over far too fast though, quite a chilly day compared to what we had last week.
The walk aims to fund raise for various skin charities from changing faces to skin cancer research. Andy came over and we headed over to the park and waited for my parents, who had walked roughly a mile or so to get to the park anyway. At the end I spotted Lorna, who had helped organise things and had a brief chat. Many thanks for a great event, it just needs some race for life eyeballs really as dermatology touches more people.
We found the tent and had a look around, a brass band playing music to the group of people and a balloon man on stilts entertaining children. Me and Andy took a few photos and then we were off, with bacon buttie in hand.
We were trying to catch up with the front of the pack to get some good photos so ended up jogging certain bits, the walk for skin, just became the jog for skin.
Nice stroll through a nice and very local park (it’s a huge park too) and at the end we collected our goodie bags, went to get our forms stamped and headed back to the car.
There are more walks for skin, going up till June so check out the site:
Walk For Skin 2008 Venues
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15
May
2008
Unfortunatly the US presidential race just took another nasty turn with Senator John McCain’s melanoma coming out of the shadows and into the sunlight.
Already Barrack has used McCain’s survival as a swipe and he’s not alone as I’ve seen bloggers across the web pick up on this too. While it’s good that melanoma is now getting some higher profile names mentioned and thus getting mentioned in the press etc it has to be upsetting for John as it wouldn’t affect his ability to do the job at hand.
Ewan Mcgregor
Recently a much loved British actor spoke of his run in with skin cancer, but details seem vauge and as such I can’t work out if Ewan’s run in was with Melanoma or Non-melanoma, we can only hope it was either the latter or a very shallow melanoma. It was a good positive story hopefully which will encourage young men in particular to seek advice from their GP if they suspect something is wrong with a mole or group of moles.
Scotish Football - Celtic Legend Tommy Burns Dies
Story has been around today in fact. From looking into the story, again details are a little vauge, it looks like we’ve lost another high profile melanoma warrior. From what I can make out Tommy Burns was diagnosed with melanoma in early 2006. The story has been getting coverage but melanoma has not been mentioned, so the public in the UK are now unable to tell why Ewan Mcgregor will make it and why the odds were stacked against Tommy.
There is no difference being made in the press as to why Non-melanoma is a lot less serious than Melanoma, so I feel I should recap that it’s all to do with the direction of growth. Melanoma’s dig downwards into the lower layers of skin, so action is needed as soon as possible, non-melanomas tend to stay in the upper layers of skin and are as such a lot less life threatening.
If you are concerned, google “The ABC of melanoma”.
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English Football - Bobby Robson
We can only hope Bobby Robson will carry on with his not so recent discovery of a very rare melanoma skin cancer.
A list of famous people who had melanoma
- Eva Cassidy
- Pat Sharpe
- Bob Marley
And Non-nelanoma
While it’s saddening that more people are being affected by skin cancer, it is a great opportunity for the media to start educating people about skin cancer and not about the sun. We can only hope anyway.
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3
April
2007
I’m considering an open letter to anyone willing to read it to urge a better response to skin cancer in this country, why because the awareness isn’t working and it’s not because people aren’t listening, I know people listen and people are concerned.
The ABC of Melanoma isn’t getting through, it’s not even being given a chance to reach people, this is shameful and equates to failing another generation of young people on skin cancer, condemning at risk people to later detections of melanoma.
At every level the educators have fallen into the “human induced global warming” trap, in that the message is very narrow and a small part of the bigger picture. It’s not working because the messages aren’t diverse enough and everyone follows sunSmart and hardly tries to shift focus on to skin and skin exams.
It’s rather like pinning all your hopes on the notion that a reduction in CO2 will stop bad things happening to the weather, it’s a false economy and doomed to fail. For me the two are running parallel to each other and I’ve been able to see a radically different perspective; there is an indoctrination on prevention in all this and everyone is missing the bigger picture that we need to be focusing on skin and not just protecting skin from UV but also looking at what happens after the sunburn or the suntan.
The solution is simple:
Detection, Detection, Detection
Sunsmart, the leading light that everyone follows, launched today, with the focus firmly back on “preventing” skin cancer not detecting it or making people aware of what it looks like and why it’s important to act urgently. As an at risk individual I feel let down again and even more so because it’s gunning down melanoma under false pretenses, you have to be seen to be doing something to slow the deaths from skin cancer which are higher here than in countries which have a huge issue with it, yet you don’t educate about how to spot a skin cancer early, you prefer to tell us what we know that the sun is dangerous and add the mole bit on at the end.
We also can’t stop or prevent people from doing something enjoyable. I enjoy a bit of sun, the perception out there is catching the sun makes you look better, you can’t change those thoughts and connotations overnight and you’ll be fighting a loosing battle against the urge to tan anyway to the detriment of a national skin cancer screening service which actually will help us beat skin cancer.
This is why I’m pinning my hopes on SAFE (Skin Awareness For Everyone) which I really do think has a really good chance at success if they don’t emulate sunSmart.
There’s not enough connotation around skin cancer to get people to think, about checking their skin. We have TLC for Breast Cancer and national screening programmes for it to detect it, yet detecting skin cancer doesn’t involve harmful scans, it relies on our eyes so it’s a non starter why isn’t skin cancer being detected early and why is there a shameful lack of focus on screening and detection?
I really honestly don’t get it where are the ABC of Melanoma campaigns and the insistence on yearly skin check ups, none of that is happening, until that happens then sorry we really aren’t taking this seriously enough and more young people may loose their battle with melanoma because the educators would rather talk about how dangerous the sun is as opposed to supporting us to get our cancers found and detected early on.
Get moleAware.
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27
December
2006
I trust everyone is doing ok over the holidays? I can imagine that to many people going through any kind of uncertainty the best gift you got this year was a tomorrow and may we live the whole of the coming year with that perspective.
There is a reason for this post, because just before the holidays I was invited to a radio interview about some extremely important news about later stage melanomas and how the cancer spreads. Although I was dialed in we ran out of air time for the story but the scientists are figuring it out. This is the story Cell protein holds key to melanoma spread, and here is an excerpt:
“When the level of this protein inside a melanoma cell drops, the cancer cell changes its behaviour: it stops growing and ‘blends in’ with its neighbours. This makes it less likely to be affected by chemotherapy drugs, which are designed to target fast-growing cells.”
It was a story of hope, but it did however send a bit of a shiver down my spine because not only am I in this boat, I know many people, many young people who are too and the general perspective the people around us have is that once the doctors cut the mole out the cancer is cured, that it’s happy days from there on. Whereas most of us know it’s only the start of an epic story, our own war on terror, because as suggested by this research the cancer almost knows it’s under attack and blends in, gets its head down and floats about as slowly as the original mole grew. I often thought of it as an ambush waiting to attack and it’s easy for anyone to say carry on with your life as normal but they aren’t living with this knowledge. Finally we all have some evidence to back up our concerns and finally the doctors are getting a grasp on why melanoma isn’t gone when it’s “gone”.
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30
November
2006
I’ve been asked recently quite a lot how my quote “health situation” is going and thought it was worth a quick update. I know why people don’t like to say the C word, but really it’s ok, it’s fine you can say cancer, so say it!
Within the limitations and frustrations of our national health service, things are going well in fact the whole thing is not even an interesting story any longer. I wait three months go for a check up strip semi naked, they check for secondary tumors, have a little prod around in my groin, frown a bit, but not much, I proceed to ask about scans and get flatly refused. Then they tell me to come back in three months and that I should carry on as normal. I do feel now that melanoma is just an addition to my life, a new topic, a new motivation, it was scary for a time but I’m seeing it as an enhancement to my character, something to be proud of and not scared of.
The only update really is my GP now has to share the check up routines, which means I have to make a frustrating phone call “can I book an appointment to see you in three months”, to which I get a reply “well no, we can’t give you anything longer than 48 hours in advance”. Good old Blighty.
At 6mm I thought my time here was up
I can’t explain why my melanoma(s) haven’t returned given how deep my biggest primary tumor was, and to a certain extent because I’ve not had any further diagnostic tests like lymph biopsy I feel like I’ve been robbed of the chance of finding out if I have stage 3 cancer instead, which would mean we could do something about this cancer other than having a chat about it. But do I need to explain why I’m surviving a 6mm melanoma? Isn’t that a great story in its own right that I’m here to blog about it?
Major UK soap deals with melanoma skin cancer
Something of a mini revolution is happening. It’s not just skin cancer anymore, we are hearing about the “M word”. I would like to divert your attention to the British soap Corrie, which is running a melanoma storyline. It has been such a strange year because on a few occasions I said Corrie could run this storyline, but I hope we can now feel we can talk about this and start to get some action on getting people to check their skin not their SPF.
Girl who lives in the dark
However good or bad my melanoma is, mostly on the surface it’s good, I don’t have XP and for that I’m forever thankful, even if I had a red skinned childhood at least I could go outside. I saw a documentary on SkyThree titled “The girl who lives in the dark”, and it’s the most extreme form of XP I’ve seen, in fact it’s the only time I’ve seen what out of control melanoma looks like, if it is melanoma at all. The girl who lives in China had to have heavy surgery to remove huge tumors from her face and the Chinese doctors, led by a British doctor who had given up his annual leave to go over to China to save this girl, managed to prevent the tumors from returning to her skin. Her skin cells and what I assume to be melanoma cells will be stored in research labs in the UK and may yet prove to be the basis of a cure for this horrific (yet so misunderstood) disease, or at least an understanding of how this disease really works, because it remains a mystery.
The end? No way, it’s just the beginning and as for that book I’ll write about this, well you are reading it now! “Beating melanoma, a manifesto for positive change” has a ring to it, the world needs a book to really spell it out, that the messages on skin caner are too simplistic and often skip over issues relating to melanoma.
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8
November
2006
Hey guys, firstly sorry for the almost month long outage of planet melanoma. A couple of weeks after setting it up in October, the computer which runs it crashed on me big time, hence I wasn’t able to do a planet run.
The planet is now back (here is the link) I had to redo the templates and stuff, it’s all very geeky but I have learned to back up my files now. The summer is finally over, after hanging on with an indian summer type breeze, we are now crunching our way through the autumn leaves, marching on towards winter.
New addition to the planet
Please welcome Helen from London, England. Helen is just starting out with blogging and is also at the start of an uncertain time after diganosis. Unfortunatly we have another young person affected by this, but together in the blogoshpere we can share our experiences, look for information, support each other and quite possibly push for better awareness.
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21
September
2006
Ok I’m ready to push this big time. I’ve created a blog syndication site which aims to be one central place to for blog content on skin cancer. Pulling in a wide variety of issues from the latest news on treatments and research, to advocacy and awareness, to peoples personal day to day expereinces, Planet Melanoma could easily give skin cancer bloggers an audience they might not have otherwise gained simply blogging on their own.
A planet is generally a geeky thing and seems to be one of these “micro formats” people keep talking about, but it aims to build a sense of community and act as a promotion platform for people publishing their own content through blogging, as well as being a place which takes the leg work of searching for these blogs yourself. Check out Planet Melanoma today, even if you don’t bookmark it you may know of someone who may be interested either in reading or adding their own blog to the planet.
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I was diagnosed with quite an agressive sounding form of the most serious form of skin cancer back in 2003. I posted my story here. I became frustrated that the information I gained to help prevent skin cancer, not only failed, but didn’t give me a chance to detect a problem early and my cancer went undetected for too long.
Eversince I have been seeking not only to raise awareness of the different types of skin cancer and why melanoma is different to the other skin cancers, but also to change opinion in how we tackle the problem of malignant melanoma. Current skin cancer awareness campaigns don’t go far enough and don’t equip people with the knowledge of what skin cancer looks like, so we can’t expect fatalities to fall untill we allow people, both in the general population and in the medical profession, to catch this disease early on, so moleaware.org aims to chage that and through blogging, is trying to build momentum behind getting people to check thier skin, not their sun protection factor.
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9
September
2006
You know everytime I tell people what the deal with melanoma is, in terms of risk factors and so on, I always get at least a suprised look. For example office workers are at higher risk of melanoma skin cancer because the daily grind is indoors, the lunch break in the summer might be an hour outside unprotected and to top it all off workers on higher incomes have greater chance of sun seeking on holiday. So when I say to people that audience is totaly oblivious to the skin cancer message it opens ears and helps people be more receptive to what is a very confusing subject.
All that exposure is infrequent, but intense and takes place over very many years, gradually building up damage as we go along. Also it might be no good to slap on the sunscreen now and take measures now suddenly because we know the sun damages our skin, because by the age of 21 you’ve had all the sun you need for that damage to be mounting up, which is another aspect which tends to get people’s attention.
So when I say actually if you stay indoors you might be at higer risk of skin cancer, it raises some eyebrows, because it goes directly against the notion of what causes skin cancer. Now I’m not saying that claim is true what I’m trying to demonstrate is you give people something to think about and they’ll be interested thus you have a better chance at educating them as opposed to telling them something they already know.
There was a study a while back which showed people who were shown UV photos of the damage done to their skin were more receptive and responded better to the ideas put forward by sunSmart. I wish to make the case that on the prevention side we should in no way be telling people what to think, but we should be enabling them to think and chose the best course of action for their situation. Much like each person is unique, each skin cancer awareness message must now start doing a better job, we are letting people down and I know given enough quality information which allows people to think for themselves, the messages are more effective.
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3
September
2006
I didn’t know, untill just. Sir Bobby Robson had a very rare form of Melanoma removed in 1995, from behind his eye. Also he was diagnosed with bowl cancer before that in 1992. Two weeks ago a tumor was found on his brain and the family has asked for no more enquiries from the press etc, this made me sit up and pay attention to the screen.
On May 8th this year an article was pubished where he explained a shadow was found on his lung during an xray he had for a sking accident. It was the Melanoma, remember his primary was in his eye, what gives? Then quoted, when speaking about coming through the lung op, as saying “It’s over. I am in extremely good health and I have got a clean bill of health” …….. oh boy, you know when you’ve heard this story too many times before? Well I have, trust me.
Don’t get me wrong I’m not being overly negative, but that news about Bobby’s suspected stroke being a brain tumor, given this information, is concerning. I guess all I can say is I hope for the best and hope for good news for him and his family. I know why they would rather not be hounded by the press and I just hope the next time I hear about it, the news is better. Although It’s not very nice to suggest, some good could come out of it, but he’s quite a high profile person. Having a well loved football manager speak out about how dangerous melanoma is would really build some momentum behind finally doing somthing about it at the detection and screening stage. We don’t have enough high profile people shouting up for us, I know that’s selfish of me, but what ever I might say would make only a fraction of a ripple compared to what someone like Bobby Robson might say to a peak time audience.
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