This is not a nice topic but is it true that younger folk only last a couple of years aftersecondary diagnosis. They keep saying this to me
Hi Signet. Who is saying this to you? Not very sensitive or helpful. As I understand it, we are all different which makes a finite prognosis extremely difficult. Surely the outcome would depend upon where you have your cancer; how aggressive it is; how you personally respond to various treatments; luck etc. etc. If it is a health professional who is saying this (am I right in thinking you were having problems with insensitive nurses?), then they need a good talking-to - in my humble opionion, of course!
I have liver and bone mets and I pressed my onc for a prognosis. She rather reluctantly said, “3 years”. But, who knows, I could be one of the lucky ones who responds well to treatment and I hope I prove her wrong. Hope some other peeps come on board to alleviate your worries. A lot of oncologists don’t like / refuse to give a prognosis because there are so many variables.
Alison x
Hi Signet
What an awful thing to tell you! All people treating me are reluctant to give a prognosis, as like Alison said it all depends on so many variables. Out of interest what do they class as younger? I am 44, should I go and started planning my funeral? or should I carry on trying to be positive and ride out each setback, like I’m trying to do!
We really don’t need people demoralising us! I was diagnosed when I was 40 and my Mum had been at the age of 70, 4 months earlier. She was told that due to her age that the cancer was unlikely to reoccur and she didn’t have chemo, she had a mast. and takes Arimadex. Whereas I had everything thrown at me! Perhaps they mean most of us under a certain age e.g. late sixties have faster growing cancers. Not that I am trying to defend your medical team, they certainly haven’t proved themselves on the ‘think positive’ aspect have they?
Take care and base your prognosis on the positive stories from people on here ‘living’ with BC, that’s what I’m trying to do.
Nicky xx
That is a horrible thing for someone to say to you. I am also young, with secondaries, and my onc said he couldn’t give me a prognosis (even if I wanted one - which I don’t). As tawny/Alison/nicky say, it depends on many, many things. They can only give you an average anyway, and who is average?
Treatments change all the time as well, new discoveries/research etc and anyway it’s not all down to the doctors, there’s plenty of stuff we can do to help ourselves and improve our odds, taking care with diet, lifestyle etc.
Maybe there is a slight difference in life expectancy for younger ones, but I doubt it’s that significant. Probably something to do with the extra stress involved of having to look after kids/worry about work etc if you ask me, certainly wish I was a bit older so I could just retire and focus on ME a bit more!
X
Hi Signet
I was originally dx in 2003, then with bone secondaries in 2008. My understanding is that the younger you are, the more aggressive is your cancer likely to be. I’m 44, definitely one of the younger ones as far as I’m concerned!
I have just come up to the two year mark since sec dx … compared with how I felt prior to that sec dx I feel wonderful now. Feel very lucky that I’m HER2+ and have responded well to herceptin, and the way I’m feeling now I have every intention of being around for a good many years yet.
Please don’t despair. Of course we never know what’s around the corner and very sadly some women do succumb to the cancer much faster than others - as others have said it all depends on type, grade of cancer, where it’s spread to, etc. But I know that, for me, the only way to live with my cancer is to accept that I have it, that it impacts on my life and that I can no longer do some of the things that I used to … and then get on with living. The sum of a person’s life is the individual moments lived - and I intend to spend those moments enjoying myself and not worrying about how much time I have left. Of course some days are darker than others, and in the beginning it was very difficult adjusting to the news, I imagined the worst as everyone does, but it has got easier to live with as time has passed.
Best wishes.
Alison
I was diagnosed with bc and mets in my early 40’s. I have a slow growing cancer that had probably developed in my late 30’s and I’m still here seven years after diagnosis. We are all individuals. I know I’ve posted this link many times before but if you haven’t read it signet this link is about a woman diagnosed in her early 20’s who had a baby many years later, despite lung involvement, it’s an inspiring story, news.bbc.co.uk/1/hi/uk/5389426.stm
and as I’m not a stats girl I like this link posted in full below…Nicky I wondered if you have you seen this? Sorry it’s so long but the author was given a life expectancy that he outlived…by many years.
Take Care signet…Belinda…xxx
The Median Isn’t the Message by Stephen Jay Gould
My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.
Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is 15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than 10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).
The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”
This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.
If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” - the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.
I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.
We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.
The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.
One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.
The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.
Postscript By Steve Dunn
Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer
Hi Signet,
I guess this is a repeat of what you’ve posted before. I couldn’t believe that you are STILL treated so negatively and nothing has been done about it.
Dx with secondaries at 24, I’ve not come across anyone younger than me who’s had a secondary dx. There are advantages and disadvantages for being young. My onc wouldn’t give me a prognosis even though I pressed really hard for it. Having received some good news very recently about how well I’ve responded to the latest chemo, I’d brush off any comments like that (easier said than done).
I did have a “friend” that really upset me with her negative comments, but now I’ve blocked her number so that I won’t be bothered by her ever again. The only one that’s being negative now and again is my mum! Can’t get away from that one, I’m afraid.
I’m sure you’re receiving some sort of treatment. If your onc (I think I remember you said before that he / she is quite positive) can tell that your treatment is working well for you, then don’t take note of negatives. I’ve tried some sarcastic approach before when I faced with those comments - “I’m not afraid of dying, just worried that you’d miss me.” - and they just seem to switch off!
Take care & and I hope they shut up soon xx
Thanks Belinda
The Median Isn’t the Message by Stephen Jay Gould - great to be remineded of this writing. Stephen Gould is an amazing man everyone should read this.
Inspiration. Thanks Belinda x
Hi Belinda
Thanks for that! When I eventually deciphered the ‘intellectual speak’ I got the gist of it. I too am determined to defy the odds (that is going to be the title of my website when I get round to launching it! - I’m a teacher so am currently ‘trying’ to do my reports, when I’ve finished reports I’ll get on with the website.)
I have completely changed my thinking in the last month and have gone from worry that I might only have a couple of years left! to a new found positivity. So thanks to all of you on here!
I am no longer considered young, but like you I may get run over by a bus tomorrow or I might live long enough to receive the new vaccination for bc or another new treatment.
Good luck, what ever, and enjoy life as much as you can.
Hugs are good
Maria
hi all.i am 53 now and have aggressive breast cancer.i have had this since 2001.[secondaries since 2009].but im still here.so i think im doing well so far.
Hi
I can’t answer your question so this is just to say I’m glad to see you back, but wish things were better for you. Does this mean that these nurses are still bringing you down ? I had hoped when you were quiet for a while that things had improved in this area. How is your OH coping ? And how are the kids ? Please keep in touch, I think of you often, there’s so many friendly folk on the forum, but I do think it makes a difference when you’ve actually met.
Love x
Thanks for your kind replies. I ended up in hospital on Monday and got out earlier despite temp still at 40 adit has been since Sunday. The care in my area is terrible and it was the breast care nurse who made that statement. She said m cancer is very aggressive as the tumour was 7cm and 15 nodes. First anyone told me it was aggressive - I knew it was big but when they removed it they were all pos sayin get thru your chemotherapy and get on with life. Secondary dx suddenly they are sayin it’s aggressive etc oh and she so knelt said and I quote ‘love I know girls in your position who lasted at least two years’. Really reassuring when already had three months.
They continue to flatten me at every turn. Complained to umpteen incONC but it never changes.
I just hope i defy their unsubstantiated guesstimates and live for another 8-10 years.
Anyway scan to check progress of chemotherapy tomorrow that they forgot to arrange. I spoke to other patients and when I said I was on 11th treatment they all said they usually check if it’s effective after 6. They told me my case had been overlooked . Just fab.
And young is under 50 in answer to one post so be a lot of us just written off in their opinions.
I am late thirties which she thinks is mega young so god help me.
However I have tried to resolve matters to no avail so I have put my trust in god and trust that he will be the ultimate decision maker xxxxxx
Hi Signet
Im so sorry to hear about the comments your breast care nuse has made, what an unpleasant shock. She isn’t a consultant oncologist and certainly shouldnt be giving you her ‘wisdom’ on life expectancy in this way. Your care team should be looking after your psychological health as well as your physical health so the fact that she thinks its ok to make such comments to you is shocking. It sounds like you may have already done so, but the PALS at your hospital should surely be able to take action on your complaint and speak to this woman about how she has made you feel.
I also discovered yesterday that despite my thinking that Macmillan Nurses were specifically available to help with palliative care, they can also actually help with advocacy on your behalf when problems like this arise. Im pretty sure that if you spoke to the Macmillan Nurse at your hospital or gave the helpline a call they should be able to advise on this.
My own story is that I was diagnosed with my primary cancer at 28 and secondaries in liver and bones at 30. I have celebrated my 32nd birthday and am two years post-secondaries diagnosis with no progression. I havent asked for a prognosis but am feeling well and expect to be around for a good few years yet!
Heather.x
Heather thanks for your post xxx well done you and thanks I needed to hear a story withmore facts etc to weigh it all up xxxxi am sooohappy for u and long may it last.
My secondary dx was only the three lesions in my liver so I don’t get what’s going on.
Well theyalso said to me that my pal won’t have long now it’s in brain. Another unqualified assumption.
I feel I am in this vortex with these amateur people withprofessional titles attacking from all sides.
Ihave started asking if it’s me, have I got a bad manner or am I putting them in a position to say these things. Theconfusion in my mind is awful.
I do think it’s a very poor NHS service here tho xxxx met so many others feeling angry and ccnfused too
excuse terrible typos on iPhone
anyway heather you go girl and keep moving from strength to strength xxx
Hi Signet,
Sorry you are having such a rubbish time with your hospital.
What shocked me was you saying ‘they’ had told you your friend did not have long now as it has gone to the brain! when you say ‘they’ do you mean your bcn, if so this is unacceptable and should be reported to PAL at your local hospital.
No one in the medical field has the right to talk to friends without their permission.
Recently l could not get hold of a friend who also has bc, eventually l did and found she had been admitted to hospital, on my next visit to see the bcn l just happened to mention her, and said l was concerned when l couldn’t contact her. She said she knew l had been calling her, but she couldn’t even tell me she was in hospital! and l totally agree with this. So if a bcn has told you your friend has not got long…needs to be reported
Take care
Sandra x
Hi All
Just to let you know that Live Chat for Women with Secondary Breast Cancer has now started. Please join us.
breastcancercare.chatjet.com/bcc/
Just follow the link above
Best wishes
Poppy
signet sorry this is off topic but just wanted to let you know id pmd you about meeting up again.
lulu x
Hi lulu I got the message and promise to get thru this time. It will help to meet someof the forum girls and have a giggle. X
Sandra you are right and this will sound awful but ihave had such a terrible time and especially this last week on the admissions ward that I just feel relieved to be home and away from them all for some time.
I am being gently pressured by some nurses to put a complaint in about an incident with the ward sisterwhich yes does deserve reporting but that along with problems with the treatment roo
nurses, BCN and the entire situation it’s just another thing to add.
I had another incident with the head of the Macmillan team too when to put it as quickly as poss, I was wrongly discharged by the ward Thursday evening despite my temp being 40 and my ONC stating i must be monitored. Got home and called Macmillan to let them know and they asked me togoback to my GP which I knew would result in being sent back to hospital. I couldn’t get an app till 4 which was great as had CT results scan at 3.30 thatday so fine. At scan they couldn’t get needle in so decidedto ask the Macmillan team to help which they agreedto do. In comes the head one and says to me ‘lynn the reason we asked u to go to your GP is because this is just a drain on our resources’ I was that surprised I said but I could not get an earlier app and have one after this. She went on to say that my temp had just read 40.1 (nurse doingneedle checked it) and theycouldnt let me out so now the problem was with them. After she left I burst into tears because I hadn’t asked to see them and had done all I was asked and had the scan nurses managed my veins I would have gone to GP.
It’s exhausted me mentally. They don’t seem to consider in all of this that I did what I was asked and it’s beyond my power if GP can’t see me till bit later, she even remarked that normally they see folk immed yet my surgery is known for being difficult. I have young kids to consider yet again that’s overlooked and they act as though I am just
Supposed to drop everything and go and I can’t.
Believe it or not I am known for my bubbly laid back personality and that’s disappeared because I have beenso consumed with anger and hurt and all the otheremotions. So is it worth it. Should I wipe the slate clean and move on for my mental strength.
Phew well that took ages lol … Maybe life is too short to waste it complaining left, right and centre.
Aw Signet, it makes me sad to see that you got that response from the Macmillan team at your hospital on top of everything else.
I was admitted to hospital twice during my last chemo with a temp over 40 and neutropenia so can imagine how rotten you must hsve been feeling. First time it happened my husband took me to the chemo ward as we thought the wait in A+E would be long. Got a bit of a telling off from the chemo nurses for doing that as once i turned up they couldnt send me away due to procedure guidelines. Turns out A+E would have prioritised me straight away, but its funny how they expect you to know exactly the right thing to do when trying to cope with a fever. Really hoping you are feeling better now and they’ve got your temp under control.
Heather.xx