UK Skin Cancer and Melanoma Patients

[sharon]

following a year of being told a mole on my back was normal and nothing to worry about I asked again for it to be looked at as it was irritating me so much. They removed as a cosmetic removal!! and it came back as MM. Having recently had WLE and SNB for MM from my back all of my results have now come back fine.
The consultant told me that no further treatment is required other than to have 12 weekly check ups for the next 5 years which i understand is standard. They also said my MM did not present as MM in that the mole looked normal.
My [b]problem[/b] is the only advice I have recieved about skin care is to 'be careful in the sun' which seams a bit of an understatement when they said this to me i was tempted to say DOH!!. Then another doctor told me 'of course you need to get some sun for vitiamin D'. My family think that holidays are a thing of the past and I am totally confused as I have always followed the suncode strictly is there anything i need to do other than follow the standardised suncode?? The doctors are good at removing and sewing up but i have had no advice about the pratical issues of caring for my skin or the emotional issues about how not to become paranoid about my moles. Has anyone any information on skin care in this situation. and how when i was told by three different doctors that the mole was normal do I have trust in what they say about the many other moles on me grateful for any advice.

[lozza]

I thought about not going on holiday anywhere sunny again. I wasn't bothered about not going on sunbathing type holidays because I find them boring anyway. I did however go to Orlando in October this year. I checked with the consultant first and he said to wear nothing below factor 15. I didn't want to miss out because I'm a big kid and love all the theme parks. I went and wore factor 50 (applied regularly) and wore long skirts/trousers, long sleeved tops and a hat. I still enjoyed the holiday just as much and am glad I went.

As far as moles are concerned all I've been told is to check them regularly myself and take phots with a digital camera to help spot changes. You can get conflicting advice though. I was worried about the shape and colour of one on my arm. When I asked the consultant about it he said if I was worried they would take it off but he had seen ones like it that were fine and others which were not!!

I asked again when I went to see the dermatologist and he checked it and several others with a magnifing thing (no idea what it's called) and said it was fine.

Unfortunately I think a lot of it is guess work!

[Alison..]

This is quite a good and authoratative site on sun etc and watching moles:

http://info.cancerresearchuk.org/health ... /sunsmart/

I've always just avoided getting burned (factor 20-30, avoiding exposure 11-3). We tend now to go on sunny holidays at Easter or autumn though, as
going to the Med in the summer hols never seemed to me like fun
even before Melanoma. Too hot...

Alison

[busymum]

Hi there
Yeah i'd agree with the two above statements. My husband has stage 3 MM and is currently in Selly Oak hospital having another big operation.

We went to Croatia not so long ago, and he wore factor 50, and covered up as much as he could. However as the doctors suggests, you do need a little bit of sunlight for the sake of Vit D.

I would suggest that if you did go anywhere hot, then try and stay in the shade, slap on some sun cream, and cover up, i.e. with a hat with a big rim, long skirts etc.

I cant think of anything else to suggest for skin care really. I dont think there is anything around to help. But I could be wrong.

I'm trying to think of the right words to say, but if you like going out in the sun, dont avoid it, just be careful. You cant stay in fear of the sun, you need to enjoy yourself sumtime. Easier said then done I know.

[seanty]

Just to note that the amount of sun a fair skinned person requires to get enough vitamin D is equivalent to around 10 minutes per day normally dressed in London sunshine. Not sure how many milliseconds this is equivalent to in Ibiza!

I previously posted a detailed discussion of this here:

http://www.ukmpf.org.uk/forum/viewtopic ... ight=#3211

All the best
Seán

[ally]

We were told not to worry too much about the sun to be honest as our daughter (who was 13 when her first mm was removed) had never been abroad - NEVER EVER been sunburned (As her mum I can state my own life on that! ) worn skirts vary rarely usually in jeans and tee shirts from toddling and yet had a mm removed from her calf. All well till this October (inbetween 3 month checkups) then groin dissection, removal of lymph glands - she is now 15 and struggling on interferon 3 times a week.
We've come to the conclusion (and I may upset some people so apologies in advance) but if its going to "get ya" its "going to get ya!" no matter what - so live for today, enjoy your holidays and dont play the waiting game - enjoy the life you have (coz tomorrow you may get run over by a bus..... I wont say a double decker as that's reserved for me!)

[therese]

Definitely apply total sunblock, its just silly to take a risk otherwise.
Also, sit in the shade as much as possible and remember to always reapply sunblock every hour, especially after you have been for a swim.

If I were you, now is the right time to do some dietary changes too. For my husband it was too little too late unfortunately, but I am a great believer in how food can help prevent illness.
Nothing major, but limit your meat to once a week, eat loads of greens (especially broccoli), drink bucket loads of green tea, take some great supplements (go to a healthfood store and tell the dietician about your condition), drink Acai and other antioxidants and really really exercise.
My husband was a cyclist and he cycled right until 3 weeks before he died even after he had been for treatments! I htink that is what kept him going for so long!

all the best

xx

[Alison..]

Therese - so sorry to hear your husband died. I remember your posts from last year. I hope you are coping OK and am glad you're able now to bring your experience as advice here.

Alison

[seanty]

Sorry to hear about your husband Therese. Please do not read further if scientific facts which disagree with your beliefs upset you, because I have some.

Mild to moderate exercise (for those well enough to do it) makes people feel better in all kinds of ways, and may even help in preventing recurrence, though the evidence is inconclusive. Excessive exercise can however depress the immune system, which is the last thing we on here would want. As with all things, dose is important.

The dietary advice you give is however totally ill-informed and misleading. You seem to have been taken in by false marketing claims and vegetarian propaganda.There are some desperate people on here, please do not mislead them in this way. Check your facts before making recommendations.

It is true that people who eat lots of fruit and veg don't get cancer as much as people who dont. It is also true that some fruit and veg contain lots of antioxidants. It is not however true that antioxidants have been shown to prevent cancer in the body. In fact the most recent study which set out to prove this had to be abandoned, as the antioxidant seemed to be actively promoting lung cancer. At present it is unknown what component of fruit and veg is responsible for the effect, or even if it is a false association. Marketing departments have however been very keen to promote the idea of superfoods and novelty superfruits like acai. These claims have no scientific validity whatever.

We on here already have, or have had cancer. There is no evidence whatever that eating lots of fruit and veg, or limiting meat consumption reduce the rate of recurrence of cancer in our situation. On the contrary, there is negative evidence-studies aiming to investigate this claim have showed no such improvement. The cancer diets promoted by various quacks are valueless scams.

The supplements sold by "healthfood stores" are at best useless, and a major study of people who took vitamin supplements showed that they had higher, not lower rates of cancer than the controls. The people who work in these stores are properly called shop assistants, not dieticians. It would be illegal for these stores to claim that their products had any anti-cancer effects whatever.

"Bucketloads of green tea" would make a person very nervous, and cause nausea and diahorrea. Whilst there is some evidence that green tea might contain substances which prevent the growth of blood vessels in the laboratory, the latest trial of the effect in people did not see sufficient evidence of this to include melanoma in its protocol, and previous studies gave contradictory results. Even if this did work, a safe dose would need to be established. The idea that "natural" substances can be taken at any dose is false.

Please could people restrict themselves to giving practical advice in areas they understand. We have enough problems as it is without anyone pushing this sort of muddle-headed nonsense on us, however well-meaning it might be.

Regards
Seán

[iomara]

Hi Sharon,
I have just joined this forum, this is my first posting. I have read anything I thought was useful and I must say it is incredibly useful. So do take your time and read as much as you can, you will find lots of answers.
I am sorry you were dissapointed by the doctors you've seen in the past and I hope you haven't lost your trust completely. As you saw from other people's experiences nobody can say exactly this is a melanoma before the biopsy, no matter how experienced are those doctors, no matter how many they've seen before.
I looked at my melanoma mole for 1 year before deciding to remove it. I am a doctor, not a dermatologist but I knew quite a lot about melanoma, I've seen many cases and many pictures. I went to take it out only because I had some time, no on calls in that period. My GP took the mole out just to keep my mind at rest but it did not look at all suspicious. And here I am now, lucky as I can be as it was a thin one, obviously with a huge scar after the WLE to remind me all the time.
Please keep you faith and keep checking your moles, you are in the best position to discover new changes. Any mole you're worried about, talk to your doctor, I am sure they will understand your concerns.
The advice regarding sun and life style changes is brilliant on this forum. Regarding the emotional issues, this is the most difficult bit for everyone I think. You'll have to find the balance between beeing paranoid about everything or forget about and get on with life.
All the best!

Iomara
PS Try to find a good aspect in everything, the skin not exposed to the sun will always look younger

[therese]

Sean, thank you for your opinion but as with all things related to cancer it is just an opinion.
The things I mentioned is what experts recommended for myself and my husband and furthermore, the healthfood store i related to are such as Whole Foods and Fresh and Wild where the "shop assistants" are in fact qualified dieticians, nutritionists and naturopaths.
I dont think you are in a position either where you can tell what is right or wrong. We all have to take in what we feel is best suited to our lifestyles and just hope and pray that it will be the right thing.

[seanty]

No, what cures cancer is not just a matter of opinion or personal belief. There are proven facts. There is such a thing as informed opinion and I have given it.

Your opinions on the other hand fly directly in the face of scientific evidence and you are helping no-one by spreading this rubbish. You are simply attempting to prosyletise on behalf of quackery. Do you not think we have enough problems without you attempting to push snake oil onto us?

As you are neither a patient or a caregiver, I suggest you peddle your tripe elsewhere.

[seanty]

In case anyone thinks this is to do with one person's opinion against another, here are the sources of my opinions as stated:

Green Tea: Cancer Research UK:
http://www.cancerhelp.org.uk/help/defau ... page=22350

Diet and Exercise:CRUK:
http://info.cancerresearchuk.org/news/a ... r/18398599

How do we Know?:CRUK:
http://info.cancerresearchuk.org/health ... wdoweknow/

The last link in turn gives links to the primary research which supports the opinions stated by me previously.

The opinions of shop assistants, no matter what mickey-mouse qualifications they might have carries less weight than the conclusions of proper scientific research.

I dont know about the rest of you, but I could do without people trying to take advantage of my condition to push their hippy-dippy religion on me.

Regards
Seán

[ally]

[quote="seanty"]

The opinions of shop assistants, no matter what mickey-mouse qualifications they might have carries less weight than the conclusions of proper scientific research.

I dont know about the rest of you, but I could do without people trying to take advantage of my condition to push their hippy-dippy religion on me.

Regards
Seán[/quote]

WELL SAID!!!

[therese]

Sean

you disgust me. You have no idea what I have been through with my husband.
This forum is to help people AND their partners/family.
Stop this negativity

[seanty]

Facts are neither negative nor positive. I have given you the facts. You don't like them.

No, I dont know what you have been through, but I'd feel a lot more charitable towards those difficulties if you weren't making my load heavier.

Don't use this forum to try to spread ignorance and superstition, and we'll all get on a lot better.

[therese]

Sean,
My advice was aimed at Sharon and I do not see the harm in just [i][b][u]suggesting[/u][/b][/i] to her that she could make some dietary changes.
It is then up to her (and others who read) whether she will take on board what I say. There is no right or wrong just each individuals opinion and experience.

Judging by your constant factual replies, I can see that sadly cancer has taken over your life and you have forgotten how to live.
I hope that others will take notice and realise how important it is NOT to get too caught up in the illness.
Yes, it is great to do research and look up statistics and make suggestions to your doctor/consultants etc. It IS important to have some control.
However, it is just as important that you do NOT let go of everyday life and that you stay 100% positive.
If my husband had been told all the statistics, facts and figures you have presented here he would not have lasted as long as he did and he had given up a long time ago. Also, if I had not (as a carer) supported him by being 100% positive NONSTOP he would have lost all faith and hope in life and ended it himself.

Now let this be the last we hear from both of us, as this topic was aimed at Sharon and neither of us have any right in starting a debate at her expense.[/b]

[seanty]

1. It is harmful to give people with advanced cancer false medical advice. It is offensive to use this forum to preach quackery.
2. You were the one who added nonsense about diet and exercise to a thread about sun care.
3. There is right or wrong in cancer treatment, or none of us would go throught the operations, chemo- and radiotherapy. We do this because they have been proven to work in controlled clinical trials.
4. No it is not important to stay 100% positive, in fact it can be less than helpful, see the link I previously posted.
5. What proof do you have for your assertions about your husband's illness?
Why do you not beleive the medical treatment he had was responsible for extended his life?
6. What proof do you have for the statements you make about me? These seem simply to be veiled insults. How is insulting me supportive?

I will challenge anyone who tries to ruin this forum with this sort of nonsense in the thread it is mentioned in. If people want to spread misinformation, can they start their own thread?

Read the pages and papers I have given links to. The advice you gave was nonsense. Are you capable of learning, or will you simply continue to push your groundless beliefs without attempting to accomodate them to known facts?

Kind Regards
Seán

[ally]

Therese - it is as you say 3 weeks since you suffered a terrible blow - the loss of your husband, my sincere deepest sympathy.

However, I must comment of the way 2 of these threads are going, I have always found seanty well informed, up to date and extemely helpful in anything anyone has asked of him. If he has no knowlege of the situation - he admits so.

On the other hand however YOU have caused me great distress over the last 12 hours causing me to question myself over my 15 year old daughters situation, did she ever get sunburned - no she never did. The closest we ever got to a tropical holiday was 2 weeks in a caravan in cornwall when she was 6, it is a vivid memory as we had just lost my father to motor neurone disease and both children came down with chickenpox so coudnt leave the caravan - again no hot sun.
To suggest to someone they make dietary changes insinuates they are not eating healthily in the first place - my children have always ALWAYS chosen fresh (ORGANIC) fruit or veg over sweets and canned cr*p - again - not my fault for causing the cancer. I might point out at this juncture I AM A QUALIFIED NUTRITIONALIST -and indeed worked for a well renowed weight loss organisation for 7 years! And Im sorry but Sean does have his FACTS right.

Your husband was a cyclist - my daughter has ridden horses since the age of 4 - she's practically lived out in our fields and stable yard since toddling, again she couldnt have been healthier.

How dare you insinuate any of the things you wrote are fact and not just your own opinion. You state previously you have spent a vast fortune going private for your husband - we looked into the same course and came to the sad finale that the end will still be just that - THE END. Every single person on this board hopes for a miracle cure - but it is just that - hope. We can never lose our hope but certainly have to have faith in medical science and facts. Please keep your opinions to yourself and for your own sake contact a bereavement councillor asap.

[busymum]

Hi all
I have been reading through this thread with great interest. As some of you may know from my previous posts, my husband has stage 3 melanoma and is currently in Selly Oak hospital.

I am probably going to get slated for sayting this. But when my husband was first diagnosed he was actually advised to go and see a lady with regards to changing his diet. This was advised by a doctor. So he did, and was actually told to drink green tea, eat loads of green veg etc etc,
However 3 years on he has gone from origianlly stage 2 to stage 3 MM.

To be honest, we didnt think this would work, and it didnt, but my husband said anything is worth a shot, just like going for all different trials. We've tried it and he got fed up and eats "normally" now (we eat pretty healthy anyway). He still drinks the green tea though, not because he thinks it will work, but because he has grown to like a cup in the morning

I do agree with Seanty about what he says and he is very informative and very helpful with the facts, which is what we need to know. I dont want this to offend anyone, but if someone thinks eating certain foods may help them, then let them do it. I know it doesnt work, but whats the harm in them trying if it puts their mind at rest, just as long as they know it probably wont work. But on the other hand this is NOT medical advice from me and as a non believer in foods helping illness it should not be passed on as medical advice from anyone else.

Thanks

[sharon]

Having just come back from holiday and having my 3 month check I came to see if I had received any advice....Oh my .... I did not think posting a query would cause such a trail.

Thank you all for your comments and advice. The factual advice is always well informed... I may have only posted one query but I have read almost all of the information posted and the links....

I have just had a further two moles removed as a result of my 3 month check up.

I had a very good discussion with the consultant and feel much better about everything. I am not generally a pessimistic person and I don’t like worrying about how much sun. What shall I eat... etc ...as I said I have always followed the sun code... I also try to eat healthy because the evidence is that eating healthy is a sensible thing to do and I agree that this has to be balanced with living sensibly... which is what led to my original query because I had not been given sufficient information… as having followed the sun code I was confused about what I should do now e.g. are there any further precautions for those diagnosed with MM.. It appears not and now I can make any necessary adjustments.

….although I think the sun smart site has very clear information and can be a very useful tool for those who would like to know when the risk is greater/lower so as not to overly rely on sunscreen alone.

These situations are always emotive and can generate a whole range of feelings and responses, Regardless of people’s advice none of which is intentionally provided with the intention to harm another…. I would just like to extend my sincere sympathy to Therese on the loss of her Husband.

Once again thanks to you all…. And just to end on a positive note while I am waiting for the latest biopsy. I have booked a cruise... America to Canada via Alaska it will be very cold but I will still watch out for that sun on the glaciers !!

[busymum]

Hi Sharon

Just like to say really, you sound a very positive person, and hope you have fun on your fantastic cruise. Sorry we couldnt have been much help to you, but you never know with technology advances something may come up eventually.