just had that - 'how long?' - conversation

I have just had a ‘how long’ conversation with a friend and I have had to face the question again.

I have secondary bc in aorta, bones, liver and pleura - 9 years after original dx.

on chemo.

I know no one can say, is that easier or worse?

I seem to be doing ok on chemo, but have a scan in 4 weeks after 6th chemo (3rd of 2 sorts).

gill

Hi Gill

I hope they didn’t press you that can make one feel very uncomfortable to say the least…some people are just very annoying and they want to press into your privacy.

I generally just say something - like prognosis is not good, and it is not curable, but it may keep responding to treatment for some time. That usually does the job. keeping my fingers crossed for your scan…

cathyx

Hope all goes as well as it can for you, I had 12 clear years after my original bc, until last year’s mets to pleura, liver and bones. I have never asked-and won’t at this stage, what my prognosis is. I know where I’m going, but have no desire to know how long it’ll take me to get there. So far I haven’t had “that” conversation with friends, but I have been deserted by a few friends.

Hi Gill
I just tend to say - a few years, no-one can say how many. My onc told me that he and his colleagues had been assessed on their ability to give accurate prognoses and they were all rubbish. The stats work for large numbers but not for the individual. His initial prognosis for me (which I saw as he sent it to my insurance company) was about 12 months. 18 months later I’'m still here and fit as a flea.

The only time I find this discussion really hard is talking to my kids. Generally I try to focus them on the present - I won’t be around for as long as I would like but today things are fine.

all the very best

Barbara

I say ‘could be 2 weeks, 2 months or 2 years - who knows’

I saw a copy letter from Onc to Occupational Health Doctor - ‘prognosis is guarded’ - basically, they cant say.

Anne xx

Hi
I was told today that I had a 10% chance of being here in the nexrt year. on monday I was told it was less that 50% chance of surviving 2 years each person seem to make it lower and lower odds so who do believe
Mel
XXXX

That is the trouble with statistics, they only cover generalities, trends and not individuals. Every BC is different and the way every patient reacts to the treatment is unique too. I was given about 6 weeks 5 years ago. My first chemo only held the cancer back for 10 months and things probably looked bleak but then along came Herceptin and I responded well (some others I know did not) so how can the professionals give accurate prognoses?

I too have never asked the question outright and I just hope that, when Herceptin fails (as it inevitably will) that those good doctors will have come up with something else - I don’t have any other choice than to hope. Everyone tells you to ‘live one day at a time’ and I do try, and I try not to think too far into the future either - it is safer that way and my coping mechanism, for what it is worth. At the moment life is good and I hang on to that.

blondie

Blondie…when herceptin fails, we have the option now of tykerb, so a post herceptin option for us is already close to being a reality!
I agree with you too…life is good at the moment, and I rejoice in that.I’ll be guided by my feelings and not some arbitrary figure which may or not have any bearing on reality.

The only time I have been told how long I’ve got is 2 years ago when my liver was in such a bad state that my oncologist told me that I had about 3 months to live (she had never, up to that point, told me of how long I might have).

Luckily though, as you can tell, I’m still here down to the fact that I’ve been on Xeloda since then so I’m eternally grateful to her for even thinking of putting me on the chemo even though she thought it wouldn’t work!

I have been reading the forums for years and rarely post. First diagnosed 7 years ago and had regional recurrances in 2005,2006,2007 and secondaries now diagnosed a week ago Start vinoralabine I cant remember how to spell it) this lunch time. Always comes back breast cancer awareness month! Went on holiday to Borneo and Singapore to celebate 60th Birthday a month ago and was unwell on holiday somehow got home not knowing how ill I was , and was immedialtely admitted to hospital with Pericardial effusion and acute renal failure and BP through the floor. Anyone else had secondaries in their pericardial membrane? They drained off over 1 and a half litres of fluid think it is in my lungs and liver. Had CT scan on Monday hope to get results to-day. Had to ask the big question and was told 6 month to a year. One of my sons is getting married inSpain early May 2009 and I have every intention of being there. came home on Thursday and am now feeling much better and more positive.
Another of my sons who had gone to NZ to live flies back with his family on Saturday, can’t wait to see them.
So enough about me.I would be interested if anyone else had anything similar.
I love the posts of people who have been given months to live and are still alive and reasonably well 2 or 3 years later. Please keep them coming!

Thanks for all your responses.

I have great difficulty thinking that I will die any time soon, as I am well - except for the side effects of chemo.

I am looking forward to the end of the year and being ‘normal’ for a while - I have a holiday booked for Feb which I hope to go on.

I suppose it is a life of going from one chemo to the next. May they continue to invent them!

good luck to all, keep going on and keep well.

gill

My wife was diagnosed in May 2006 with secondaries. We were told at the time she had six months at most. Well here we are at 2 1/2 years and she is still here. We know we have run out of chemo options now but we will wait to see what the Onc says tomorrow.

X

Good Luck to you and your wife Terry, hope your wife’s onc has some treatment ideas.
I was diagnosed with stage 4 from the very beginning in 2003. My onc said he thought my bc could be controlled for several years. I never asked him how many years is several.
I plan far ahead and have just booked a holiday for June 2009. Best Wishes.x.x.x

It is worth separating doctors’ estimates of life expectancy directed at insurance, occupational health and suchlike from what they believe might be possible with good response to treatment. As I understand it the “terminal” diagnosis that goes with secondaries has 6 month life expectancy and that kicks in insurance payouts, early retirement, DLA. Fortunately many of us keep going much longer than that with treatment…

Rachel

I think there are two issues here: firstly having the how long conversation with friends/family etc and secondly the how long issues themselves.

With regard to the first I am grateful to a best friend who talked openly 10 years ago about her terminal diagnosse from another kind of cancer. At first I was awkward and embarrassed with her, but because of her ease and openness I was able to acknowledge her dying with her, say stuff, write stuff and ultimately to feel as resolved as it is possible to. She died more of less as expected 4 months after talking through not doing further treatment. Because of her I think I’ve found it easier to initiate those how long converstaions and am indebted to those friends who are able to join in…not always the people you expect…I have had wonderful conversations with a couple of colleagues from work…and awkward times with other closer freinds who don’t ‘get’ it (one friend thinks I’m about to die next week…but that’s mainly her prejudices about me being on morphine.)

As to the oncologist converstaions. I feel rather sorry for them…damned if they get it wrong, and damned if its rightish (except the dead don’t come back to tell us OK the onc broadly got it correct.) My own present onc is of the elderly old school persuasion so wouldn’t say…but I think these days it takes a wise oncologist…cause the fact is unless you are really at end stage they simply don’t know. They can make guestimates about trends and possibilities, but the landscape of secondary breast cancer is changing all the time…there isn’t actually the data to know, for example, what the upper limits of a good response to say herceptin or xeloda might be. I don’t think onc ever ‘give us’ a time…guestimates are always and only that…about parameters. I’m not going to play beat the oncologist or I will show them games. There is some resaerch that at end stage some people do hang on until after an anniversary or important event…but generally that makes for a difference in days or weeks not months or years.

So much depends on where diasese is, what treatments are available, how a particular cancer responds to tretament, etc
etc.

Anecodotes help but only up to a point…unless you have precisely the smae kind of cancer and the same kind of progession as someone with the good or bad response its impossible to make a logical comparison. I have inklings about my own cancer…the good signs that it has spread slower, the bad signs that it doesn’t respond particularly well to chemo after chemo and i haven’t got many chemos left…and actually don’t know many people with triple neg secondary disease who last ‘years’. But I’m hoping to become my own anecdote. (After all who ever heard of a lost voice and a dmaged vocal chord as a secondary breast cancer symptom)

It concerns me that now secondaries are talked about more openly that the same kind of myths seem to be growing up about secondary disease as primary disease…with focus on the ‘many years’ that a few people live and not much talk about those who fall way below the averages…2-3 years with mets. I think if you’re running out of time it may be small comfort to hear about other people with entirely diferent cancers still jogging along 23 years later. Well it doesn’t give me any solace.

There is for me one and only one consolation in the whole dreadful going to die of cancer buisness and that is if you are someone like me who wants to reflect on her life, map it, make sense of it, say goodyes as properly as possible then contemplating premature death is indeed a better option than the suddeness of the bus.

None of us knows…the uncertainty is hard very hard. I dread most of all my disaese changing track, speeding up, getting me quicker than I really expect.

Its all a continuum…somewhere in the UK this week there will be someone diagnosed with primary beaset cancer who will be dead withing the year, long before some of us here speculating on how long…and someowhere on these secondary forums I bet there will be someone here telling the tale in 20 years time…but we just don’t know which of us its going
to be…

Of such is the diversity of breast cancer.

Jane

I think you’ve said it all really, Jane. And your dread is the same as mine - it getting me quicker than I expect! I want enough time to say my goodbyes and leave things in order etc when everyone around has accepted that my death is indeed imminent. My dread is that I won’t have that.

I still find it difficult to look too far ahead - can’t book a holiday at the moment for February next year, let alone June, Belinda!

Kay x

Hi Kay, I hope you do book that holiday…my thinking is if I’m not here next June or too ill to travel a missed holiday will be the very least of my worries and if I’m well it’s something to look forward to. I try and plan little things ahead, whilst acknowledging I’m living with the uncertainty of stage 4, the holiday is to a place in the UK we try and visit every year. We last visted this September and I came home and booked next summer straight away.
Hi Jane…yes you’re right…I know, knew, friends who died within months of their diagnosis and another lady who lived ten (pretty good quality of life) years with bone mets (and none of her treatments, surprisingly, were either very long lasting or very effective) We differ in that I do like to hear of others who are doing well many years down the line…even if it doesn’t apply to me in the end…it has to be verified stories though!..not someone who once had a friend whose Gran, Sister, Aunty, Cousin lived for 25 years with breast cancer…nothing vague. Best Wishes…x

Hi Belinda

Yes I like the stories too…but just having them told without the suggestion that it means anything for anyone else…I hated it when I was struggling with my original poor primary diagnosis to be told stories to ‘cheer me up’ and the stories really weren’t relevant for my cancer.

I was 54 when I was diagnosed and I already knew both real bad news stories and real good news stories…even though then I didn’t know a triple negative from a stage 3c from a lobular…and mets wasn’t a word I knew…it never fails to amaze me that some people with breast cancer don’t seem to have known anyone else with breast cancer until they got it themselves. I once totted up the friends, friends of friends, other people’s mothers and daughters and friends once removed who I had known with bc before I got it (ie nothing to do with forums) …and it was probably around 30 women (didn’t know any men) and about half had died.

Jane

Hi Jane…I knew a number of people with bc before my own diagnosis and after diagnosis I met other women (sadly no longer here) who lived literally a few minutes walk away from my home.
I sometimes have times, days, when I feel the need to re-connect, in my mind, with those I met up with who have since died. I don’t want to forget them, forget a name, miss someone out. I have re-read archive messages from the old forums, written just a few years ago, where I’m the only person left alive in a thread. And if I start counting email friends I never got to meet…yes, gosh, there are so many.
Belinda…x

I don’t mind the “how long” conversations - it gives me an opportunity to be honest about my cancer. But it is amazing how many people think, once the chemo is over and my hair has started back, that I must be “cured”. Not many people have the courage to ask me the “how long” question.

I love the stories of long term survival because it tells me what is possible. I know it is probably not probable but I think that little piece of hope lingering around my heart makes this a little more bearable.

Oh, and isn’t it annoying when people hear the word cancer and think they are knowledgeable enough to tell you all about their friend/grandad/neighbour etc who has a completely different sort of cancer and think that somehow you will benefit from knowing that they had years (even though they very often are now dead!).

Deirdre