UK Skin Cancer and Melanoma Patients

[gerrymac]

Sorry I tried to post this before but pressed the wrong button by mistake halfway through.
I am new to this forum and apologise if this seems a bit long winded but I suppose I just want to try to put my feelings in print to try to make sense for myself.
I'm a 46 year old male with a wife and two teenage daughters.
I do appreciate that there are people here who are a lot worse off than me and I hope I don't sound too self indulgent.
Just before Christmas I noticed a mole on my arm and for some unknown reason I freaked out about it. It didn't look anything more than a spot and my family didn't think that it was a problem.
I went to the doctor in the beginning of January and he looked at it and told me it didn't worry him and was probably just a granuloma. In fairness though he did say that he had been wrong before and because it was worrying me I should consider getting it excised and biopsied.
He told me to come back in 6 weeks and arrange a minor surgery with him.
He also said that if it changed I should come back sooner.
It may just have been my imagination (it probably was to be honest) but in the next week I thought it had grown and I went back in and my surgery was brought to 1 February.
He excised it and told me the biopsy result would be in 14 days. He would contact me if there was anything untoward but I could phone in for a result if I wanted.
I didn't realise that for a mole the results take closer to 20 days and i was on the phone every day from day 14. It was the only thing i could think of.
The receptionists must have thought I was an idiot because I was on every day asking if anyone had my results. I just didn't trust the bureaucracy to work properly.
As luck would have it last Thursday was the first day i forgot to phone and sure enough I got a call from the surgery telling me to come in the next day as there was a problem with my pathology. I thought the worst and didn't sleep that hight. Incidentally I have actually not slept since either.
I went to the doctor yesterday morning and he told me he was surprised but that I had a malignant melanoma. He told me a Clarke number or something which I can't remember and a depth of 0.6mm.
I had actually been expecting this news but it still hit me like a bolt of lightning. I had a lot of questions ready to ask him but I forgot them all.
He was trying to be very supportive but when he told me that he had other patients who had surviced this and that one one of them had now lasted ten years it actually made me feel a lot worse. I wouldn't have thought that 10 years was that long a time.
Anyway he told me I have to see the dermatologist for a wider excision because of rogue cells or something in the surrounding tissue and I went home.
My wife was at work and I phoned her with the result in a very matter of fact manner. When I got home my eldest daughter asked me how it had gone and much to my embarrassment when I started to tell her I just filled up and had to leave the room. That was a terrible thing for me to put her through and i feel really guilty about it.
The upshot is now I am waiting for the further excision and I can't think of anything else but the melanoma.

I wonder if anyone could answer a few questions for me:

Am I overreacting to this?

What can i expect in the next few weeks?

Should I inform my employer of this?

What is the most likely outcome?

Once again I'm sorry for spouting forth and I do know that I'm lucky in comparison to a lot of people but any replies would be much appreciated.

[ally]

Hi Gerrymac,
Firstly - everything you are feeling and experiencing is totally understandable and NORMAL for anyone in your position.
I am sorry you have had the result back of melanoma; but so pleased you have found this forum and managed to put your fears down in writing. No apologies are needed, the more you can talk about this shock the easier (I'm not sure thats the right word! ) it will be for you to deal with it. It is a terrible blow to have an unfounded fear realised, thank goodness you pressed on for removal with your doctor.
Dont worry about appearing an idiot pestering the receptionist - the fact is they put the phone down and can forget all about it, they go home at 5pm - but for you the constant worry is disabling and draining.
A wider excision is the normal route to go, it is carried out to hopefully remove all rouge cells, usually followed by a skin graft. After this usually 3 monthly check-ups are carried out by a consultant at the hospital with you checking yourself in between times.
You're no over-reacting, nor blowing this out of all proportion - anyone who understands the dangers of Malignant Melanoma take the prognosis very seriously. Yes, I cant lie to you - it is a life threatening disease -current statistics say the it affects 1 in 50 people and 1 in 4 cases are fatal. However that equates to 3 out of 4 people living long happy lives. Statistics are just that - numbers! They are not for individual people for please dont read too much into them and scare yourself silly.
You do - I feel (others may disagree) have to tell your employer as you will require a small amount of time of work to recover from the WLE (wide local excision). Of course you cant focus on anything other than the melanoma - its one hell of a shock, but I promise you it will get easier.
The "waiting game" as we call it is the worst bit - waiting for results, waiting for treatment, waiting for the next check-ups....the wait goes on and on.
As for your daughters; teenagers are very good at picking up on atmosphere's, tension, etc and blowing things out of all proportion in their minds - much better to be totally honest and open with them. Let them talk to you about it if they want to - they will be just as shocked and scared as you are; please don't be embarrased because you showed your emotions - its very healthy and good for them to see you are scared rather than covering everything up and giving them the impression it's a taboo subject which is not to be discussed.
The most likely outcome is that you will be left with a scar, be inconvenienced by 3 monthly check-ups and be forever vigilant about you and your families moles - and fingers crossed thats what will happen. Try to relax - write down your questions and take them with you - have a look at this site for more idea's - http://www.mymalignantmelanoma.com/Mela ... tions.html - it's very helpful.
Again, no apologies are needed, we understand your fears and shock and are here to help you all we can, let us know how you go on, and ask as many questions, talk about your feelings, fears, etc. as much as you want - the members on here understand exactly where you are coming from.-
Take care and very best wishes,
Alison.

[gerrymac]

Thank you so much for the post. It was very thoughtful and has helped a lot. I've no doubt that I will have a lot of questions in the next few weeks and I am so glad that I have this forum.

[Marsha]

Hi Gerry,

I have nothing to add to Alison's post other than that I am still here 14 years after my primary diagnosis! I know that doesn't seem like a very long time either, but it's better than 10 years! As Ally says most people will have their initial surgery and a wide excision and go on to lead normal lives and never have another run in with melanoma... some don't.

Wishing you loads of luck... oh, and if you have any critical illness insurance, don't forget to claim... not wishing to put the fear of god into you anymore than necessary!

Marsha x

[gerrymac]

Thanks for that Marsha.
Actually I do have critical illness cover but it says that it only covers invasive malignant melanoma. I take it that means if it has spread to other organs so I'm hoping that won't have to pay out.

[Janet2]

Hi Gerry,

Welcome to the forum where I'm sure you will find plenty of support. I'm very sorry to hear you have been diagnosed with melanoma and can appreciate what you're going through. It is quite natural to feel this way with so many questions buzzing around in one's mind when one is first diagnosed. I sincerely hope your further excision goes well and as has already been mentioned you should have regular three monthly checkups. Also, I suggest checking yourself in between times.

With regard to telling your employer, I think this is a personal choice, but I probably would. They will then hopefully appreciate what you are going through.

When your doctor informed you that he had other patients that had survived 10 years all I say is they are only statistics and figures. I've been given several prognosis and I'm still around since being diagnosed in 1992/93.
From personal experience I find it helps to make a list of all the questions you want answers to and take them with you to ask your consultant when you next see him/her. Also it may help to take someone along with you as they sometimes remember things you are told that you may forget.

I hope you are able to discuss your feelings with your family.
Please keep us posted as to how go on.
Best wishes, Janet

[gerrymac]

Thankyou Janet, that was very reassuring. I seem to be getting over all the initial emotions and got a good night's sleep last night followed by a game of golf (played badly as usual). I will take your advice about talking to my family. Talking to you all on this forum has helped to restore a bit of perspective for me and I can't thank you all enough.

[Tuckerz]

Hi Gerry

As Marsha says If you got critical illness insurance, then use it. I was diagnosed in June 2008 with MM no primary, which had invaded my Lymphnodes in my left arm pit, Had these removed. A course of interferon, and I'm fine right now. Have 3 month check ups and 6 month ct scans. The dermatologist told me to claim on the insurance as my policy was also for intrusive melanoma. So when you are back in the hospital ask for their oppinion on the claim, they got to fill the forms in anyway.

Take care and keep talking

Ian

[gerrymac]

Thanks Tuckerz. I suppose it won't do any harm to fill in the forms.

[chrisl]

Hi Gerry
Sorry to hear about your MM
I to was recently diagnosed with 1.0mm MM in December last year. I’m not very good with words but these guys on this forum are amazing people. they have been a great help to me on understanding MM
All the best
Chris

[elliott868]

Hi Gerry
The word cancer is enough to scare anyone, so your reaction isn't silly at all. I thought I'd cheer you up by adding that my first melanoma was 1.5mm thick and was 24 years ago! WLEs don't always need a skin graft - it really depends where they are and how much flesh has to be removed - my surgeon managed to do mine without a skin graft (because I begged him to try so I could sit my A levels) so instead I ended up with a much longer scar (10 inches initially) and was just a bit lopsided at the time.
The important bit afterwards is to be vigilant about your moles (it sounds as though you will be!) and not to let MM colour everything in your life, unless you have no choice. Living every day in fear is no way to live, so be yourself, enjoy your life (but go to your check ups and keep an eye on any changing or new moles and tell your consultant about them).
Take care & good luck, Sharon E

[clyde]

Gerry

I am sorry to hear what you are going through but the advice give by others seems to be very sensible and has also been of help to me. I was diagnosed with a MM on my back in November and I have since had the wide local excision (they did not need to do a skin graft with me). I have to say that at the time, with all the unknown going on and trying to cope with it, my biggest initial concern was not being allowed to play golf, however badly, for six weeks! Personally I did tell my employer and they have been very considerate but it is a personal desicion. Hope all goes well.

Clyde

[gerrymac]

What a lovely bunch of people on this site. I am very grateful that people with problems of their own would take the time to help me like this. You have all reassured me that all is not as black as I thought it was and I promise that in the future I will try to help others coming to terms with this. The thing I have learned in this very short time is that there are others who know from personal experience what I am going through and my fears are actually quite normal. Thank you all again.

[vanessa89]

Hi, I had 3 moles removed about 3 weekes ago...the results came back and i have been referred to a Dematalogist, my appointment is on 3rd april....just because iv been referred does it mean i have cancer? or can it mean its harmless.......im just abit confuessed atm as my Doctor used big words i didnt understand and tbh i was too shocked to take anything in as i thought the results would come back Ok.

Im 21, I had 3 moles removed but it was only one that came back with the 'bad results' the one that came back bad appeared from no where roughly a year ago....it wasnt even a freckle beforehand...i just woke up one day and it was there....it wasnt very big just average size i would say

so as you can tell im very confussed and would be rele grateful if anyone could give me some advice on what to apect on my appoitmnet with the dermatolagist

Thank you xx

[gilly]

Hi Vanessa,
Welcome - I can't help much but to reassure you that people here have lots of experience and knowlege - you are at a very early stage in your diagnosis but you are on the right course - I would ring the person who gave you your referral - explain that you didn't understand/were too shocked, and get them to spell out simply what they said before - you can't do much until you see the dermatologist but at least people on here can clarify the words used etc - as always it could be something or it could be nothing, but you are going to find out soon - don't frighten yourself unnecessarily - you are at that place of "not knowing" that we all on here know well - hang in there until your appointment and ask your doc what he means by a "bad result" - it may be just that they need to take a closer look - take more skin off around the "bad" mole to be certain - there is a good list of questions to arm yourself with both on the cancer research uk website and Sean's my melanoma site, for when you go for your appointment. Try not to get too worried/bogged down in possibilities until you know !
keep in touch
Gilly

[gerrymac]

Just an update. I've got my letter to attend the dermatology specialist. There was no info other than my appointment for tomorrow so I'm anticipating this will just be an initial consultation where he will make arrangements for the WLE. Getting more used to it now and am feeling a lot more positive because of what I have read on this board. For some reason I started a diet in the beginning of January (maybe a sixth sense that I was ill) and have lost 18 pounds so it is strange to feel so much fitter and yet have to deal with this. No doubt I'll have some questions after tomorrow's appointment.
Also, I took the advice given and submitted a claim on my critical illness policy which covers invasive malignant melanoma. I've got a feeling that they'll tell me they won't pay out but I've been paying it for 12 years and there was no harm in sending in the paperwork.

[gilly]

Hi Gerrymac
Hope all went well for you today and that you had all your questions answered - good luck for your WLE !
Gilly

[gerrymac]

Hi Gilly,Sorry but I haven't been on for a week due to work commitments. My initial consultation with the dermatologist was actually a very positive experience. He examined me all over, including feeling the lymph nodes under my arms and didn't have any concerns about anything there.
He also sat for quite a while explaining that the wide excision was to be on the safe side and was normal practice for all MMs which of course I already knew from reading this site.
Because of the location of my excision site I won't need a skin graft and this will mean that my wide excision gets done quicker at his surgery.
I then spent 20 minutes with the melanoma nurse going over how to protect myself from the sun in future and how to do mole checks once a month.
There is a lot of criticism of the NHS in this country and it may well be justified but I honestly felt that I was in good hands and that everyone was doing the very best for me. Maybe I have just been lucky with the hospital or individuals who are dealing with me.
The upshot is that I am awaiting a letter to have my WLE in the next couple of weeks and am feeling a measure of control and a lot calmer about my situation.
This is due to the treatment I am being given but is also down to the individuals on this board who helped me through the darkest few weeks of my life. Thanks again and I will post my experiences of the WLE when it comes about.

[gilly]

Its great that you feel looked after thats half the battle - I agree that generally the NHS is fab - I have now experienced the french system for 10 years - and while I have no complaints of the french system either (maternity system is a bit archaic !) - there is no need for the NHS to get the battering it so often does from the press - free at the point of need and 100 % paid - shouldn't complain too much - in France its only 60-70% paid plus top up insurance - good luck for your op !

[martin pink]

Hi

This is my first post , and id like to say how pleased i am i found this forum , its already answered so many questions i had , so a big thanks for that .

i had an innocent looking pink spot removed from my left arm 4 weeks ago along with a basal cell carcenoma , i was called back to the hospital 2 weeks ago and informed the innocent looking pink spot was a rare malignant melanoma without pigment , breslow thickness 0.4mm , stage T1a clarks level 2 .

It was diagnosed as an in situ and invasive malignant melanoma as it had invaded the dermis the next level of skin .

I had the wide local excission today and am sat here with a nice big 5 inch gash in my left arm.

i spoke to my doctor who said it was an invasive malignant melanoma as it had invaded the dermis and wasnt confined to the outer layer of skin.

i have also today claimed on my critical illness insurance , though not sure if it will go anywhere , as the diagnosis was in situ and invasive malignant melanoma , so is it in situ which is not covered or an invasive malignant melanoma , as diagnosed as both ?
il let you know how i get on with this.

my prognosis is good , but as its invasive it is obviously a worry for me and my family. im trying to remain positive but privately am scared witless .
i canonly thank those that have posted here , and hope through my experience i can post and help another through this.

the nhs have looked after me as well as any private hospital could have and i praise them all , my doctor advised me to claim as my mm is invasive , though completely excised and prognosis is good , so im not hopefull on claim.

[martin pink]

well no where nearer understanding whether my melanoma was in situ or invasive , or if as diagnosed both ?

i have the shakes and alot of muscular pain following the wide excission on my left arm , and convince myself that every blemish is another cancer , paranoia i know , but this has knocked me for 6.

[gerrymac]

Hi, I last posted in March. I had been diagnosed with an MM 0.6mm Clark level 4 and was at the lowest point of my life. I was helped with advice leading up to my WLE and got through that by knowing what to expect because of the experiences that had been shared with me. I then got on with my life with no thought of helping others in my situation or thanking those who had helped me.

In hindsight, this was a really selfish way for me to go about things. I would like to make amends in a small way by sharing my experiences from WLE onwards.

When I attended for the WLE I was not prepared for just how deep the surgeon would go or how painful and uncomfortable my arm would be for a few weeks. The feeling was that the scar was really tight for a while but I did not expect just how invasive the operation would feel.

Beause of work commitments I could not take a day off but couldn't drive for the first couple of days and had to have a workmate chauffeur me.

Despite this, I have to say that the overwhelming sense I had was relief that the operation had been done.
After taking advice on this forum I sent in a claim on my critical illness insurance cover. I didn't think I would be paid out but put it in anyway, thinking that the insurance comapny would wriggle out of it.

To my surprise the documentation was very simple and within a couple of months the insurance had paid out with no quibbles. It wasn't the biggest sum of money in the world but it was life changing for me, clearing me of some debt and leaving me enough over for a new kitchen that was badly needed.

If any of you are newly diagnosed and have critical illness cover which includes 'invasive malignant melanoma', my understanding is that this just means that the melanoma has invaded the epidermis from the dermis ( Clark level2?).
Don't be afraid of claiming and try to avoid the feeling that you are 'cashing in' on your illness.

You have paid your premiums and you are due the money. The money doesn't in any way compensate for the fact that you have this cancer but it can help you to prepare your family financially for the worst should it happen.

Anyway since then I have had my first three monthly check which was thankfully clear and I am getting on with life.
My priorities have changed in a lot of ways, in that I now put my family above work where I didn't before and I appreciate my wife (who was a tower of strength) much more.

The physical illness still worries me and will continue to do so but in a strange way I have experienced a lot of positives in my perspective on life and also in the way that my family and I get on. My daughters got a fright and now we have much more communication and I would say a closer relationship.

I was lucky in that my job gave me access to a psychologist to help me through the process and I would recommend anyone with this option open to them to utilise it.

Anyway, I want to take this opportunity to thank the people on this board for posting all the information that is here and for the replies to my queries. You made a difficult process bearable and turned ny confusion to an informed position.

I would like to encourage any 'lurkers' on the board with concerns to share them with the caring individuals here. A trouble shared is a trouble halved and all that.

If any newly diagnosed people ou there would like to ask me any specifics regarding my experiences I will be happy to reply though please bear in mind that there are much more informed people on this board.

[gilly]

Hi Gerrymac
glad everything seems to be going swimmingly for you - thanks for updating us especially about the insurance stuff - hope things continue well for you and that you can relax into calm vigilence and live life.
all the best Gilly

[kath1974]

good to hear from you and that you are doing well
I had critical illness but the premiums were cripplingly expensive as I have epilepsy so it was "loaded" and I just couldn't keep paying those premiums every month so I cancelled it. Not long after that was diagnosed with melanoma! Oh well!
My employer was also good and supportive and provided counselling access although I didn't utilise this.
Pleased you are doing well and keep us updated.