UK Skin Cancer and Melanoma Patients

[elliott868]

How lovely to find this site! I have a long history of melanoma - but it's taken a different turn lately. Basically I grew up in the sun - getting burnt every weekend between the ages of 6 and 11. My first melanoma (stage 2A) was diagnosed when I was 17 and just required wide excision surgery. Over the next 20 years I remained cancer free but had 5 suspicious (but benign) lesions removed. At 37 I then had my second melanoma, and at 40 my third. These two melanomas were caught at the earliest in-situ stage because I have continued to have 4-6 monthly dermatologist check ups over the last 13 years. Everyone (without melanoma) keeps telling me how lucky I am that my melanomas get caught early and warrant nothing further than surgery, but to be honest I'm starting to not feel terribly lucky, and would like to learn about anyone else's experience of multiple melanoma. My melanomas have all been in different sites (back, arm, throat) - so essentially they have all been individual primary cancers, unrelated to each other. I've been told that my chances of having more occur are higher than the average person - but haven't been given any stats or even anecdotal evidence - and I sort of wonder what the future holds. I offer my best wishes to everyone with posts on here, for successful treatment and positive futures. Would appreciate any info/ experiences anyone can share, thank you.

[Marsha]

Welcome to the site, Elliott. I'm afraid I can't offer you any words of wisdom or anecdotal advise regarding multiple melanomas, I'm "lucky" that I've only had one, but perhaps "unlucky" that it recurred and metastasised into the lymph nodes in my groin.

You gotta love those people who think we're "lucky" being closely monitored, I'd much rather have never had melanoma and never have a hope in hell of winning the lottery!

Marsha x

[LynnPJ]

Just want to say welcome to the forum Elliott, none of us wish we were here but we are all so glad of the comfort and support of the members on here.
I am sorry to say I do not have any information on your multiple melanoma condition, having had one only is enough for me, - but I am sure someone on here will pick up on your post and have some info for you.
I also agree with Marsha, - if I had pound for everyone who has said to me "how lucky I am" I would be extremely wealthy by now, - the other scenario Elliott is that many people do not see melanoma as a cancer, - I received a comment only yesterday re.this. I think I might start carrying some leaflets in my handbag!!
We battle on Elliott - keep strong.
xxLynn

[ally]

Hello Elliott,

Like Lynn and Marsha I too am sorry to welcome you to this forum, however you are in excellent company.
Now, without being bitchy and certainly not wanting to upset anyone - I see things from rather a different angle. You are lucky. Very lucky. Not lucky to have Melanoma - because that is devastating - but very lucky to have caught it early 3 times. There are many people out there who were not so lucky to have caught it early enough the first time - if you would seriously like to get this thing in perspective look at this site, and then tell me how unlucky you feel.
http://www.katiesmidnightwalk.com/index.htm

[Lucy]

Hi there

It must be awful to have the threat of these things hanging over you. I guess most people who have ahd melanoma once also feel that way but a lot of them have the spreading and deeper invasion to take their minds off a second primary - the first primary is their main worry if you like.

It's brilliant that you are continuing to have checks and hopefully anything else that does pop up will be caught in situ as well - which does confer a highly unlikely chance of spread and as you must be aware, 99% survival/cure rate.

I can only imagine how horrid it must be to have one after another come up. I would be feeling scared and unlucky too...I'm not a patient, my best friend is, and I have never had melanoma - yet - so I am extremely lucky compared to you. There's no use in anyone getting competitive about this stuff

I think yes, your chances of having more primaries are higher than people who have never had a melanoma, but I have heard stories of people going on for years and years without anything progressing further than an 'in situ' stage, and just having them chopped out when they appear.

This is definitely the best course of action for you at this stage, and I wish you every success in dealing with any more that come along.
Take care

Lucy

[elliott868]

Thank you very much for these replies and kind supportive words. Of course relative to others on this forum with melanoma that has become invasive I am indeed fortunate that mine are getting detected and removed at an early stage (so far) but it's hard sometimes to put aside the fear that the more I have, the more room there is for error. For example my last melanoma was only picked up because I was seen by a different dermatologist to my usual consultant (who had looked at it a few months before and thought it was ok) - and this different person had a different view and recommended taking it out. Like many of you I have young children which makes the situation a bit more nerve wracking. Anyway - I just wondered whether anyone else was experiencing the same situation with them popping up in different places, and whether this might peter out or accelerate. My thoughts are with everyone and all your own individual situations. Sharon E.

[gilly]

Hi Elliott, I also have not much to offer on multiple individual melanomas - however my husband also grew up in the sun (sailing a good deal) and was sun-burned several times before 15 - this is the time of highest risk, our oncologist informed us, in those days the risks were not appreciated fully, but there is really no excuse now to let your kids get sunburned ! - he had several suspicious moles removed at 18 - and then nothing until last year (age 40) when he was diagnosed with a single deep melanoma - we have been having 3 monthly observations but it has gone to the lymph nodes now - we are keeping a careful eye on all his many other moles - body map and regular checks.... the thinking here seems to be remove any suspiciuos mole whenever it occurs - not worth the risk of it developing...
all the best

[elliott868]

Dear Gilly, I really do hope everything gets sorted out quickly and completely effectively for your husband. I've just discovered that the two melanomas I've had in the last 3 years are more 'normal' following a childhood of sunburn (apparently the sun damage can take 20-30 years to turn into cancer cells), whereas my first melanoma then at 17 (24 years ago) was more 'unusual' because it was relatively soon after the actual sun damage had taken place. Back in those days suncreams were easily washed off - and we were in and out of the sea, so it's not surprising that we got burnt, and no-one was aware of the potential dangers. It sounds as though the timing of your husband's melanoma is also more 'usual' then as well - a few decades after his sunburn - not that it helps to know it - but it's all starting to make a bit more sense to me. Before knowing this I was confused as to why I would be getting more melanomas now, because since my first one I've been really careful and kept out of the sun, and used high factor sunscreens on myself and all the family etc. Like your husband I've also had a number of other suspicious moles removed (5 in addition to the 3 melanomas) and my 3 siblings have too. I'm amazed that still so many people are unaware of the potential danger of sunburn and it fills me with horror to see people parading around like lobsters. My very best wishes to you and your husband, Sharon

[Pip]

Hi Sharon.E
My husband has the same situation. He has had 16 removals in 19 months, he has had 2 basal cell carcinomas (spread on skin), 1 squamous cell carcinoma(spreads under skin but generally not around body), 2 malignant melanomas, 2 normal moles and 9 dysplatic moles (precancerous that can change with 10 mins in the sun). He has had 2 WLE and is covered in scars. I dont know if he is lucky or not !I know we get very depressed with it all as its such a stress waiting for biopsy and excision results continually. He has been told he is a ticking time bomb as he has many more moles.Indeed unbeknown to us there may be a malignant mole working away amongst the hundreds on his body, that we have missed. The last MM was a pink lump which happened to be seen just as we were leaving the clinic room.
He has surgery every 3 months since May 2008. Our greatest fear is obviously that of 'something' being missed.We have to have faith in the Doctor checking him over and I, of course have to keep a good eye on things.
He was hospitalised as a child in Australia from sunburn but in recent years he has been extremely careful in the sun. I have no idea why some people seem to get multiple melanomas and some just one. Why should he get them, all of a sudden, at the age of fifty? Who knows!

[gilly]

Its worth remembering that there is a genetic element here - if you have red hair genes (even if not the red hair) you may be predisposed to melanoma even if you didn't get burnt - its not just "lifestyle" and there are just as likely to be other as yet not proven environmental/genetic factors ... there should be no blame here !

[MrConfused]

Surprisingly those with multiple "primary" melanomas survive longer and may have actually developed an "immunization effect". This effect is consistent with the "immunization effect" observed in animals inoculated with multiple tumors. See "Enhanced survival in patients with multiple melanoma" "American Medical Association (Arch Dermatol 2003; 139:1013-1018.

[LynnPJ]

Actually this is an old thread, -
so you maybe "confusing" us - forgive the pun.

[MrConfused]

We are here to help people not attack those who inform and share information. Yes, this is an old thread however I bet many people are still interested in this topic and that is why I posted this abstract. Work on helping people. Show some compassion and care. I personally, if reading your comment and not aware of this abstract would not appreciate your attacking the person who provided this information.

[Pip]

Can you plesase tell me where you got the information that states that my husband may have developed an immunisation effect from multiple melanomas. Because I sure as hell would like to sleep at night knowing all will good.

[MrConfused]

Read the thread. I quoted the article. If I had multiple mels would I appreciate this information? Would it help me sleep better at night to know that maybe its not so bad as I thought? Yes, I would appreciate someone sharing this information. I would not make fun or light of this comment or attack him. I would say "thanks". Are you than cured if you have multiple mels? I never said that. Please read the article and make a informed comment. Don't make fun of people with multiple mels. This is a forum to help those less fortunate than ourselves. Best to you.

[LynnPJ]

Dearest Pip don';t let this person frighten you, - I have no idea why he is putting this information out.
Lynn

[Marsha]

Jeez, you numpty... we are the less fortunate... now we've been polite...

DO ONE!

Marsha

[Pip]

Thank you Lynn.
He will never frighten me. As we all know MM is the most frightening thing ever.In this household we know that firsthand.
I have nursed till death, young parents who have sobbed to be leaving their children behind. I have helped a young mum make up a box of keepsakes for her 4yr old son. I have helped a young Dad decide on hymns for his funeral.
I have had to change disgusting dressings on proud ladies.All have had MM.
There is nothing on this earth that would help me sleep at night knowing as I do that my husband is a ticking time bomb to end up like the poor dear people I have nursed and the dear friends I have on this forum.
I never made fun or light of his comments or attacked him. He has a big chip on his shoulder and thinks his brother is the only person ever loved by a family member who has MM.I never mentioned the word 'cured' in my posting.
I did read the article. I have my own comments on that!
I cannot respond to him directly as he is out to attack anyone for any reason.My time is better spent then that negative approach to life.I hope he can find it in his heart to do something postive for MM sufferers, especially his brother who in the next year may well have discoverd this site and hopefully get comfort from it as he has missed that from this man.
His brother may well need a lot of support in the future and I can see he will only get a daily dribble of old studies and opinions thrown at him. What a waste of time.

I hope all is going ok with you Lynn and your dear husband.Pip xxxx

[LynnPJ]

Thank dearest Pip
Will be sending you a PM, - things are much better with us, as you will see.
Hoping everything is good with you and your husband,
Your postings on this forum are so supportive and so well received by all of us.
with utmost thanks as always
xxxLynn