UK Skin Cancer and Melanoma Patients

[ellie]

Hello everyone,
Came across this site after learning on Friday 13th! that I have MM.
I have an excision on my right leg ner my knee, and have Clark's Level 3, 0.9mm.

I am still trying to come to terms with the news, I am going back in on Friday 20th for the excision and have never been so terrified in my life.

So, a little background about me... I am 31, and half italian, I spent the 1st 11 yrs of my childhood living in Italy, and naturally taking in the sun.
I suppose I am a classic case as then I followed this up with weekly visits to my local sunbed salon, coupled with three annual sun filled holidays...some might say, I was a timebomb waiting to happen...still, you never thinkit's going to be you do you???

I have taken great comfort in this site over the last few days, so many of my questions seem to have already been answered but I still feel like I need to know more..

So, please if anyone can answer the following then do......
1. Having been told I have to stay out of the sun and cover up completely..what happens on holiday??? i.e. do I apply the S.M.A.R.T. rules or is that only designed for prevention rather than for those of us who already have MM.
2. What are people's thoughts on changing your diet? green tea, leafy veg etc...
3. I am a heavy smoker, (20per day), should I seriously consider giving up?
4. Will I ever be able to accept this, and why is it, that all of a sudden I feel more aware of everything around me?>>(sorry..that sounds a bit deep....)

Anyway, that's all folks!
Best wishes to you all, and looking forward to your replie(s)!

Ellie

[Marta]

Hi Ellie,

Marta here. As you can guess from my name I am a fellow Italian who grew up just like you did, running about in the sun for 3 months a year. I am 28 and was diagnosed with MM in October, mine was 2.2mm: really scary. I undertook wide excision and I am now visiting my doctor every 6 weeks to make sure everything is ok.

I spoke to different doctors about 'the sun factor' and they all told me it is the only known cause, however some people do get it under their feet and some others, like me, in places where the skin is not really exposed to the sun (on my groin). Some doctors told me it would be foolish to sunbathe ever again, they said I have to be careful and always wear long sleeves, trousers and a hat and considering that I still spend 5 weeks a year in sunny Italy (I am a teacher so I have this privilege ) that sounds quite bad. Other doctors told me not to overreact and said that as long as I don't sunbathe from 10 am to 4 pm it's ok, you just need to be reasonable and always use a good sun lotion to protect your skin.

I personally think that going around covered up like a mummy or staying in all the time would just make me feel ill, sad and weird. From now on I'll certainly stay out of the sun in the central hours of the day and probably will not sunbathe ever again but I won't say no to a nice swimm in the sea, even during daytime!

I guess time does help but personally I also think that trying to live a normal life is the best way of facing the problem: I felt so much better when I went back to work and after a while people started to behave normally again and stopped asking me if I was ok every 5 minutes. I know it's because they are concerned but it makes me feel ill and weak. Back to full strenght now though and it only happened 4 months ago.
So chin up and be positive, I'm sure you'll be fine, it's just a matter of time.
Take care,
Marta

[ellie]

Hi Marta,
Thanks for replying, and answering some of my questions...also nice to hear from a fellow italian!
Good News! had my results from the wider excision..and all is clear!! Obviously will have to keep going for the checks, but I did breathe a huge sigh of relief...have had a lot of tears recently...I think it was the first time I realised what this was all about, I was too worried about the surgery.
Sorry to hear that yours is so scary..let me know how you get on.
Am going to try and be really postive now and keep healthy.

And yes, I will be going back out to Italy for the summer, but will be very careful.
What part of italy do you come from?
Chat soon and take good care...Ciao!

Ellie [/list]

[Charlotte]

Hi Ellie,

That is great news about it being clear. I was diagnosed in June 2002 with a 1.1mm from a mole on my back and my wider excision was also clear. I have been having three monthly checkups ever since and so far so good!

All the best for the future.

Charlotte

[ellie]

Hi Charlotte

Thanks for your message...yes it was really good news that all was clear, but since the op I have lost all sensations in my right leg from the thigh to the calf (excision was at the knee) so I am being referred to a Neurologist as the Consultant thinks that he may have severed some nerve endings...
As the saying goes..'It never rains, but pours!' could be worse though.

Glad that your 3 monthly checks are all ok.
Now that all this is over, I am just trying to come to terms with normal day to day living..going back to work next week, hopefully as I havent' tried to drive yet!

Bye for now

Ellie

[john_99]

to those on this thread

Good you seem all clear.

Personal advice:
1)never relax on the routine check ups. For me, it was a shock when it was suddenly not "all clear" more than 2 years after the first MM removed.

2) Keep on with all the right things to keep healthy and happy! Yes, happiness is important I think and I do not think a coincidence that my reoccurence happened after a period of stress etc.
(there is a great website called something like "authentichappiness" - try to search for it on google)

[john_99]

meant to say: in reply to Ellie's initial questions (maybe too late, she probably knows all the answers by now!)

- sunscreen etc; well my work actually takes me into a tropical country with very strong sunshine. I just carry on with "normal" protection - screening cream, hats, long sleeves etc etc, and am just more careful about it. My doc said I should always continue to be careful in the sun - even though nobody can be sure that is what started it off.

- I personally believe that diet is important. Somebody told me that soya is good, and all the red coloured veggetables....and - well there are lots of things. It is hard to prove anything, but anyway I find it quite enjoyable.
Green tea is great and I converted from a very heavy "black" tea drinker, and now never drink anything except "green" of which there are various types. Agian, hard to prove anything of course.

- seems to me that giving up smoking is always advisable (sorry to lecture here !!). Since my reoccurence I decided to reduce alcohol and feel much better for it. Again, who knows if this has any effect on the MM, but just being that bit more healthy must be a help.

- will you ever accept it ? well - time is great healer they say. I am now about 4 years since the initial diagosis, and 18 months since reoccurence - and I feel I have accepted it all somehow - cannot really define this - especially as I know I was quite miserable at the time.
The feeling of being more aware seems to last on and on, and I still get that. It seems good to me.
Now and again I read about somebody who did not make it through with MM, and it makes me feel each day (etc) is worth celebrating....wow! yes! I am still here!!!

good luck to all
-
PS: by coincidence with ellie & marta, I am also half Italian - altough actually inherited my Dad's ginger complexion.

[ellie]

Hi John,

Good advice....which I have already taken on board...although still havent' given up smoking..but will do.
Also a convert to green tea, not sure if it helps, but it's a lot healthier!

Totally agree about keeping healthy in between check-ups, and hope that this will not reoccur.

Thanks for answering the rest of my questions..

All the best, stay healthy

Ellie

[Marta]

Hey I thought that Italians with their dark skin didn't have to worry too much about this kind of things but here you go, I am as pale as an Enlgish who has never been on holiday in the sun

Sorry if I ask John (maybe you did say already on the site or maybe you'd rather not say, don't worry if that's the case) but I read that your MM unfortunately recurred, so I was wondering whether you wanted to share with us what happened exactly and most of all I'd love to hear that you are better now of course!
The only time I asked my doctor about my nasty thing recurring he siad: 'then we would be in trouble' and after that I always wondered what he meant exactly but never really wanted to ask/know.

I went to hospital yesterday and so far so good (5 months after surgery). I was told not to celebrate yet though, my doctor keeps reminding me 'small party in 3 years and big one in 5 years' ...

Anyway, really hope you are well!!
Marta

PS - Ellie, I tried to send you a 'private message', not sure whether it works or not, let me know...

[john_99]

Marta

Its OK to ask.

I supose how serious a reoccurence is depends on how far advanced you were at initial surgery.

FOr myself, the first surgery was to remove a skin blemish. Actually I worry about everybody talking about "moles" - mine was much more like a freckle that spread wider & changed colour, but was certainly not mole like.
Anyway, at that time the doctors thought they had removed all the MM, but of course there were the routine check ups. About two and a half years later one of these checks found a lumpy lymph gland in the armpit - I had missed it myself despite my self-checking, and had been quite happy by then as had been told that the first 2 years are the most likely problems.
They checked it and it was MM. They took out all the lymph glands in that area, and say again that they feel they removed all of it.
Now the routine checks continue.
I was offered interferon treatment or to join a trial but actually declined both of these.
The doc says any further reoccurence could be another gland or could be a bigger organ (apparently there is a wide choice!). That would not be good.

Have heard that interferon is standard treatment in USA even at early stages. My speicalist does not seem to think much of this, but it seemed surprising to me that it had to be me who found out this fact. Why are these doctors so secretative.
From another forum (www.mywavelength.com) I have heard others whose first surgery with glands etc having to be removed, so I guess I was lucky. (actually that forum has quite a lot fewer posting to this one, but have only recently discovered this)

Actually I feel fine, and healthier than ever it seems (except my left arm still slightly stiff in movement!). The whole experience seems to increase apppreciation of every day things and experiences.
Thanks for asking, and hope all this not too boring.

Hope all is well with you -
I have not seen much detail about your condition - so go ahead and share, somehow it feels OK to talk to others who have some similar experiences.
Note: maybe we should start a strand where everybody can just post in their latest situation from time to time,

[Marta]

John, thank you so much for sharing your experience. I guess it's really scary reading about someone who was unlucky enough to get MM back but it is also very useful because from your words I can tell that you are fighting it with courage, that you are being very brave and that things are going well for you.
When I first joined this forum back in November I was surprised to see that noone seemed to have a MM that was as 'big' as mine (it was 2.2 mm) and also that nobody was talking about recurrence in terms of their personal experience. My doctor kept telling me that I had 25% chance of getting it back after I undertook wider excision so I felt like I should have been more worried than everybody else in here (but then again, maybe everybody feels this way). But now, although I obviously wished you didn't have anything like this to share, I feel less scared - talking to you is really nice because you had a very nasty experience but you are saying that you feel good and positive about the future which is so important. You really gave me lots of hope, thank you so much for that!
Do let me know how things are for you, I'd love to stay in touch
-Marta

PS I think you are right, we should regularly post information about how things are going for us, it would be useful for everybody. We could have a page with a list of all the members of the forum, a brief summary of their stories and an updated statement about how they are - maybe somebody could set this up?

[Marta]

PS John, I forgot to ask you: was your MM near the lynphnodes where it recurred? And what did they do when you had your regular check ups?
My MM was on my groin and when I go back for check ups (every 6 weeks now) my doctor only feels my groins for signs of recurrence (I also have to do Ultra sound scans avery 3 months). It's a relief when the doctor says it's ok but I often wonder whether that type of check up is enough (if you read the very long correspondence about the 'sentinel node biopsy' in this forum you would know how paranoid I am )

[john_99]

Marta

My original problem was right in the middle of my chest. When I get checked, the doc does a pretty thorough overall survey- poking around particularly in the groin and armpits, but also in the belly and neck...as well as looking around most other places!
He also does a regular chest x-ray, but no ultrasound or other stuff.

I really do not understand about whether occurences are local or can be remote from the original problem, but seem to remember him saying that it basically can travel anywhere. It seems odd to me that he still checks the area where they previously removed all lymph glands - but he said he was just being careful.
Seems good for you to get checks at quite frequent intervals, but why not ask next time why the other areas are not checked.

Keep posting on the site from time to time, it is good to know how others are getting on.
Good luck

[ellie]

Hi Marta & John

Have been reading your messages...and seeing as we are on the re-occurence theme...wondered what you both thought of screening..
I mean 'The Mole Clinic' and Microderm.

It's just that after everything I went to my GP for a check up, not the Consultant ones, and he had a quick look and decided to remove a mole from my left leg this time. (Had it out on Friday 16.04).
Oddly, the consultant had not spotted it or should I say worringly!, I dont' think Gp is v.concerned and am sure he is being over efficient...but as I do seem to have a number of them, I am not sure I can handle the 'waiting' period and wider excision surgery again and again..
Plus on a purely vain note, I do not relish being cut up every few months...on the offchance that a mole may/maynot be mm.
My boyfriend has been helping me research and thinks we should book in with 'The Mole clinic' unfortunately I am an NHS patient and have checked with my hospital and they are unable to offer this.
Have either of you had this type of screening, do you have any thoughts on it's effectiveness...it seems fairly costly, although that is not a concern, but I do want to be sure that it will work.
Sorry, if this seems like an essay, it's v.late.
Glad to hear you are both doing okay.

Keep healthy...

Ellie
P.s Marta - have sent you a reply to your private message..

[danensis]

My wife had a melanoma on her abdomen. She had it removed, and was put on a one year course of melanoma, which nearly killed her. She lost a third of her body weight, and developed peripheral neuropathy. She had to have two "holidays" from her treatment, and two dose reductions. Towards the end of the treatment, another melanoma appeared on the end of her scar. This was removed, and a few months later another appeared.

She had regular check-ups, but a year after her last operation, and only a few days after a check-up, she noticed a lump in her abdomen, and it was yet another melanoma.

Now she has a swelling on both groins, and we are awaiting the results of a blood test and a scan. However the hospital have also arranged an appointment with a surgeon, so it sounds as though they are planning a biopsy, though they haven't told us this yet.