Do the statisitcs apply to me???

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After reading on this site much discussion of statistics and doom and gloom and inevitable death… I’d just like to say: DON’T believe a word of it!

Statistics are historical.

We are the statistics of the future and they are getting better and better.

No-one has analysed the results of what we are doing now, and even if we could see into the future to the results, we would see ourselves, all different, across a wide spectrum of backgrounds, circumstances, events and outcomes reduced to one or two numbers.

I came across this article written by a scientist affected by a so-called lethal cancer whose median survival was just 8 months. The man lived for 20 years and died of something completely unrelated. He explains how to look at statistics. It’s a bit technical but read it and celebrate and get on with the process of living, whether you are in treatment right now or not. I particularly liked his metaphor - not glasses half full or half empty - who wants half-measures in life anyway? He talks about seeing the doughnut and not the hole…

Doctors who give a prognosis of years to live are surely basing this on statistics. They are also giving a script for a self-fulfilling prophesy. Ignore them!

Here’s the link: cancerguide.org/median_not_msg.html

Wishing you wellbeing and long life,
Jenny

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Hello Jenny. Excellent post. I don’t make a habit of burying my head in the sand in the hope that things will go away, nor do I ignore reliable evidence. Your post makes sense. Of course statistics are historical, and of course strides are being made medically all the time. Thanks so much for reminding me of that. I will now continue to do what I have been trying to do, but with a bit more ease after reading your post: Just get on with living and loving.
Love emma
xxx

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Thank you Jenny,
I totally agree. Through my sister, who works in palliative care, I know they are very loathe to ever give any sort of time scale - basically because people flout the statistics all the time! The trick is surely to carry on living - regardless of diagnosis or prognosis, the only certainty in life is that one day we will die. We don’t know how, or when.
By the way, i can’t see the doughnuts, did you eat them all?

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Thanks Jenny

Somebody talking sense at last. I’ve been scared witless by some of the stats thrown about on here and have decided to TRY not to look at them. However, just wanted to add that it’s human nature to ask the question in the hope the answer will be favourable. It’s when the answer is not favourable we wish we hadn’t asked.

I think you have to listen to your oncologist about YOUR situation - he will no doubt draw on past similar cases to assess your treatment and so there has to be some statistcs he uses to help. I believe that I am getting the best course of treatment for MY situation that the medics believe have the best success rate - surely that’s what we’re all hoping for.
There’s no magic pill - YET - but it’s getting better all the time & I for one am planning on being around for a long time yet!!!

Doughnut anyone?

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Doctors who give a prognosis of years to live are not doing this according to statistics but according to ones own histological profile. I know of many cases where they have been remarkably accurate in their prediction. Stephen J. Gould’s famous article does encourage one to be optimistic and I have read it many times when I am feeling low. Statistics mean alot to me, as I fall very much on the wrong side of them, being diagnosed with liver mets on initial bc discovery 2 years ago. If I make five years it will be not much short of a miracle so reading of improved survival stats means alot to me and gives me hope that there may be more options in the pipeline which may help me see my children grow up. Sorry, but because of my young family and my diagnosis, I don’t feel able to ‘ignore’ stats. I have to do my best to plan for the future and my young children. Talking sense, it does remain the case, as stated by BCC in one of their press releases that up to 50% of early diagnosed cases may go on to develop advanced disease and figures are currently being collected to assess the accuracy of this ‘statistic’. Many of you do not realise just how many users of this board have died, many of whom I have had the privilege of meeting. Much of what happens on the secondary side of breast cancer is not posted on this board, one of the reasons being that it may be too distressing for many (especially new) members to acknowledge.

I am definitely not a glass half full person, but a large glass, full of red wine, person, as many members here can testify… I am though, realistic.

Long life & well being to all, cheers!

Jenny

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This will be my last posting on BCC. There’s now a bigger gulf between those with mets and primaries than when I first started using the forums in 2004 and I’m now finding it too distressing at times to continue reading these forums.
Like Jennywren, who I know well and have met several times, I’m an optimistic gal who LOVES life.
But I’ve also met and lost too many friends who really wanted to live and defy their prognosis but were unable to.
I’ve lived a long time with mets, I’m well and I’ve had no progression since 2005.
But this is not down to my attitude it’s just I have a lazy breast cancer that responds to hormonal treatment.
I wish you all well.
With Love, Belinda.x.x.x

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I too have often read Stephen’s article and found it very beneficial esp. when I was newly diagnosed but I agree with Jenny statistics are important. When dx I asked what my prognosis was the answer wasn’t merely based on historical data but was and continues to be based on MY cancer and how I have and do react to treatments (I have mets). It’s only a self -fulfilling prophecy if you allow it to be. For me it has been important in setting boundaries. I do get on with living as opposed to dying with my illness but I am painfully realistic that I won’t be here in years to come so knowing possible outcomes has allowed me to plan for the future e.g. financial planning, house adaptations, funeral planning, holiday planning…

As I said on the Kylie thread it is also important to have accurate stats. so the correct support systems can be put in place.

I wish with all my heart it was a simplistic as getting on with living, for those of us already on the wrong side of the stats. facing our prognosis and the harsh stats. is something some of us choose to do and shouldn’t be dismissed as us being negative for me it’s quite the contrary.

Twinkle xoxo

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I’m sorry we wont be reading your wisdom here Belinda and send you love and courage and wellbeing.

To Jennywren and Twinkle and Belinda, I have lost many friends and my own partner to cancer and have learned a great deal from them about living and dying.

Being realistic my own prognosis is not hot either and I know one day I shall die, of something, maybe secondary breast cancer, which I already have for a while now and we have to make hard choices in priorities - mine is at the moment a choice between leaving home to rent a place which has a complete roof and bathroom and kitchen while I attend to my health and conduct my business to maintain a livelihood or sink the energy I need to fight for my life to rebuild my cottage and possibly leave a monument to folly behind me instead of happy memories. (I had the roof off and had ripped out the kitchen and bathroom at the time of my penultimate diagnosis and now look out daily on a stack of building materials from the door of my makeshift kitchen.) I’ve rented another place and will move back in there in a fortnight’s time after a summer camping out at home. I shall visit my cottage and keep my garden.

Interestingly the shadow of death falling somewhere a little way down our path makes us attend to things that need attending to anyway, make every moment precious and plans important and we analyse what we are doing in our lives and often stop frittering away time. There are things I want to do or see done or at least started before I go. I shall do what I can and also get on and live my life.

I agree with you, Twinkle that an intimation of our own mortality is a Postitive thing.

This has been my path for 11 years and more so in the last 4 years since recurrences began - it takes twists and turns more frequently now yet I can still lift my eyes to the horizon and let my spirit fly with the wonder of life, right here right now and am already one of those who has improved the present day’s survival statistics and hope to stick around to read of the next improvement. To Mammabee, Quisie and Emma - take cheer! Live life! Cut the crap and savour each moment!

Wellbeing and longlife and love to all,

Jenny

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Its a sad illness we have, but you Belinda and Jenny make me feel very humble, i have a good prognosis, but you can only hope that it will remain so, we need your wisdom and knowledge and common sense Belinda, just like we need yours Jenny, life would certainly not be the same without you to guide us. i don’t think there is any fine line, cancer is cancer, we all need to support each other in any way we can, and the only people who really understand is ourselves.

love to everyone

Alisonxxxx

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Message for Belinda,

I have been on and off this site for 4 years and will really miss your posts Belinda. I don’t know you personally but you come across as a lovely very caring lady and always have a kind word for the new ladies joining the forums.

Good luck for you and your family in the future.

Sarah x x

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Hi All

Just had to comment, I know my son doesn’t have cancer, when he was diagnosed at 14 months old with his condition, we were told that he would probably not be here at 2, then it was definitely he would be gone by 5, then it was 10, then it was that no way would he be here to see his teens. He will be 21 very soon, has such willpower and says live life to the full every day as tomorrow may never come. He is terribly physically disabled, wheelchair bound, can’t even lift a pencil but is very intelligent, with a bright sunny disposition.

Just goes to show that not all the doctors are right all the time.

Love K

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Hi, Kelly. What a wonderful inspiration your son is to all of us! Thank-you for sharing your experience with us. What a set of events with each “PROGNOSIS” to live with! and what an achievement for all of you to pull together and confound the professionals! Long may this last - living life to the full, for each of you and whatever that is for each of us.

Wishing you well,

Jenny xx

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A statistic is just that: a statistic. It calculates (numbers) an average, based on average care and on average reaction.

We, on the other hand, are all individuals. Strong, beautiful, perfect… even if with breast cancer. One individual always has reactions that change the statistic: so reading what is the exact survival percent is for our case does not apply to us - it is a number, and unless one verify all the stats sources (mode of calculation, sample taken - aka how many people and how representative, location of sample, care provided etc) it is very difficult to actually make any sense out of it. Statistics are very easily bend in one way or in another, depending on what is that need demonstrating.

A doctor can review a case, and give his/her own prognosis (that is quite different than a stat!!!). It is definitely a valid view of the case, even if we all should remember that doctors make mistakes like all human beings and do not necessarily know everything, and in this case it is an evaluation, not a cause-effect situation.

This has no impact on the fact that this illness is mortal. can be mortal. I believe we probalbly all know dramatic cases - but hopefully we also know some good ones. It is important to be realistic, as much as it is important to have hope and trust in ourselves and in our strength.

Last but not least. 35 years ago, breast cancer was considered an almost always mortal illness (I don’t have historical stats, and frankly - I don’t want them). That is when my mom was diagnosed: July 1971. She underwent the up-to-date then care, extremely debilitating, and had a quite grim diagnosis. I am happy to report that she has turned 70 last year, is well (if not for a lymphoedema that makes her very sad) and up and going, she has brought up us kids and enjoy now retirement with her grandchildren around.

I don’t mean any disrespect to all having a tough time. My heart goes out to you - Jennywren and so many others I don’t know. I hope that as we all grow into this illness, more and more treatments will become available against cancer in general, and that we’ll win our private wars.

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I think anyone who hears an “average” prognosis needs to remember that it’s not an absolute maximum - 50% of patients will live longer than that! However let us not forget the 50% who succumb faster.

Raw figures aren’t much use - for instance, I’m relatively young and healthy which gives me an advantage over frail elderly ladies, but on the other hand I’m pre-menopausal which is a disadvantage. Herceptin improves my chances, but if I ever have to stop taking it (my heart scans don’t look too good) then my HER+ status is actually a curse. Taxotere the wonder drug didn’t make any darn difference, but I might be one of the lucky ladies who benefits from one of the old school drugs! There are so many factors to take into consideration that it must be impossible to give patients a realistic timescale. Even if doctors did have a crystal ball they could still only tell me the *average* for my diagnosis, not my personal chances.

I haven’t asked for my prognosis because at best it would only be a guess, and why worry myself? I know that at some point in the future they will have to tell me “sorry love, but you’ve probably only got a few weeks/months” but till that time comes I’ll just carry on as normal.