UK Skin Cancer and Melanoma Patients

[jen]

I just wondered if there are any statistics out there about the likely timing of melanoma recurrance?
I had my melanoma 1st removed in May 2006, I had a recurrance in my lymph nodes in Aug 2009. I asked my consultant at the time does that tell me anything about when I might expect a further spread to become aparent if I am unlucky enough for that to happen, but she was very vague + told me what i already knew; that the 1st + 2nd year is when most recurrances occur and that its after about 12 or so years before you can hope that you've 'got away with it'.
I know statistics are not necessarily helpful but i'm also guessing there must be some data out there on this.
Almost one year on from finding the much dreaded lump I guess its more on my mind than usual , I've seen all the survival data based on the new stagings, but i now understand that in some people melanoma does still progress but more slowly and its that bit i'm interested in understanding a bit better, just incase that turns out to be me!
thanks, jen

[seanty]

Hi Jen,

the stats don't tell us anything about timing, or indeed anything at all about our personal situation, they are about the group, not individuals. If you look at the survival curves, you can see how many of a few thousand patients at a particular stage were dead after a certain time.

The missing bit of information is whether you are one of those who get recurrence or die, or not. Some people with melanoma in-situ die. Some people with stage 4 MM live. As a group, the chances of the first group are much better than the chances of the second, but for individuals, we either get a recurrence or we don't. I know the lack of certainty is hard to deal with, but that's how it is.

[gilly]

Hi Jen - I am like you - searching for time periods/likelihood of recurrences etc - but it is as Sean says there is no relief in the stats - we just have to get used to not knowing - we all want deffinitive answers, but with the relatively small amount of research done and the craftiness of melanoma, we can't have this specific knowlege. My hubby's lymph recurrence was was just over a year after his primary in situ was removed - we have just had the 6 month scan/check up (so far so good) - but I'm more dreading the November one, as I irrationally feel that this is the one where something may show up because, with the mitotic rate etc, it is the same interval as the first metastase - but there is no proof and naturally we HOPE it won't come back - there are many people on here that have been through that "desperately searching for answers phase" and I am sure they will all tell you (as I am trying to convince myself) live life, stay busy, try not to obsess too much and try to put it to the back of your mind, all the while staying vigilant. Best of luck.

[AngieT]

Hi Jen,

I know we are under the same consultant oncologists so it doesn't surprise me that Dr Marples answered your query as she did. Dr Mulatero told me 'That's the 1000 dollar question & if I had a definitive answer I would also be able to predict the winning lottery numbers!' Not exactly what I wanted to hear but I knew when I asked that I was expecting him to know the impossible.
After reading so many stories on here & on the Mac site I realise that everyone is very different - some find a mole & within months they find it's spread to the nodes & beyond whilst some, like myself, manage to go for 13 years before it comes back. Some people with thick melanomas never have any further problems whilst those like myself with less than 0.75mm thickness aren't in the 95% cured group as they first thought!
I now put my faith, rightly or wrongly, in the fact that it took 13 years to recur, so if it spread so slowly the first time hopefully it will take just as long to spread again next time! That thought is the only way I get through each day & sleep each night!

Best wishes,
Angie

[jen]

yes you're right of course, and thanks for taking time to reply.
I know that statistics apply to the group not the individual but like Gilly and Angie its hard not to have some (however misplaced) sense that there must some sort of a relationship between recurrance interval and prognosis. I'd find that sort of probability data helpful in trying to make sense of it all ....................even though as an individual I know I could be anywhere within the whole range of outcomes. I guess one day we might know.

When the National Lottery first came out, my mum decided she was going to log all the numbers as they came up each week, believing she could somehow use that information to choose a winning combination. It took her 8 weeks before she admitted defeat! Maybe its in my genes.

thanks for your support
jen

[elliott868]

Dear Jen

I don't blame you at all for wanting to have some idea of what to expect, it's exactly why I found this forum a little while ago, wanting to get a better fix on what I should expect too. What I have mainly learnt and what no professional ever mentioned during the last 24 years since my first melanoma, is how different the whole melanoma experience can be for each of us. It sounds silly but the concept of a recurrence hadn't even entered my head until I read this forum - and my story has gone along the lines of a stage 2, 1.5mm deep melanoma on my back removed 24 years ago, a melanoma in situ removed from my arm 4 years ago, and a melanoma in situ removed from my neck/throat 1 year ago. In between all that another 6 unusual/ dysplastic moles and a strange lump removed, all benign. I was always given the impression by consultants that once things were removed and you were given the all clear, that was that, a clean slate. Reading people's stories on here has made me realise that that isn't necessarily the case, and for a while I felt very scared about spread/ recurrences/ new melanomas/ the future. After a while it became clear to me that the best way forward (for me, can't speak for anyone else) is to push the fear aside, live life to the full (being careful, vigilant and attending all check ups of course!) and resolve to deal with what "might happen" - only when it happens. I'm much more cheerful as a result! I really wish you a fear and melanoma free future. S xx

[ruth]

Reading people's stories on here has made me realise that that isn't necessarily the case, and for a while I felt very scared about spread/ recurrences/ new melanomas/ the future. After a while it became clear to me that the best way forward (for me, can't speak for anyone else) is to push the fear aside, live life to the full (being careful, vigilant and attending all check ups of course!) and resolve to deal with what "might happen" - only when it happens. I'm much more cheerful as a result!

I don't think anyone could suggest any better attitude than that! Having been diagnosed 4 years ago that is exactly summed up how I try to live my life. Hear hear

[ruth]

Sorry not sure why that quoted from Jen, first time I've tried that! All the best to you all anyway xx