Olympic hopes

My brother told me about it (being a keen Tour de France follower). He had a small percentage of recovery BUT HIS DOCTORS DID NOT TELL HIM THIS. Personally I found it deeply discouraging when my first hospital oncologist kept trotting out ever-worsening statistics (as they revealed their mistakes). I think that oncologists should refrain from issuing percentage survival rates UNLESS they are good ones or the patient asks. I am not one for clouding the truth - we ALL want to know what is happening - but to US personally, at the time of speaking. xxx Penny PS - Haven't watched any of the Olympics myself as I seem to have too much to do LOL! Just off swimming...

Must say, I'm shocked to hear that doctors give you information about your (expected!) mortality if you don't ask them!

I mean, it's OK to say general things like 'with advanced cancer the odds on surviving worsen' - fair enough, that's pretty well understood anyway, isn't it?

But surely it is basic medical ethics NEVER to tell someone 'when you're going to die' IF THEY DON'T ASK YOU!!!!

With my husband, his oncologist greeted him with the words 'I can't cure you, but I can keep you going longer, and with better quality of life' - and that seemed spot on (we knew it was metastatic right from the DX, so weren't in any 'false optimism'!!!!!). But he never said how long that 'keep going' was likely to be until my husband specifically asked (at the next consultation when we'd got our brains round things a bit more, and our hearts....)

A friend of mine, breast cancer survivor, said that 'even if you don't ask, the docs usually find a way of telling you GOOD news', which, again, I think is fair enough - some patients think things are worse than they really are.

Also, we've found that the very FIRST thing any and all the docs say is 'What have you been told?' - they specifically check what our current state of knowledge is, so they don't let something drop we aren't prepared for!!

Each of us is different - some 'want to know', some don't. WIth us, I'd rather not have had any direct answer from the onc, but my husband had got to the stage where he said 'I want to know what they think I've got left, so I can plan the rest of my life'...his call in the end, not mine. (and I guess I could always have left the room if I really hadn't wanted to know.)

As for the original subject of the post - the Sportsmen/women Cancer Warriors - yes, I think they are a fantastic bunch, and again, it's essential they do a massive 'PR job' on 'youth' to both warn them of the all-too-often unanticiapted risk of 'youth cancer' to encourage them to screen/check as necessary, and also, of cours, to be a fantastic inspiration to them.

Julie2

Hi I was told this week that the % issue would only be given to you if you only want it. In my case I did and had a 54% chance of the melinoma returning with the surgury alone, but this went up to 64% after a course of interferon.
My wife asked about the doctors keeping anything from us, We were told that it was morally wrong to hold back any news good or bad. Was told it used to be that way where doctors kept info from patients. But not now.

Hi Kraftygirl,

Just wanted to say thanks for mentioning this, I read it just after 7pm so I put the Olympics on BBC1 and saw the swim just in time. I too am inspired by people like this, so thanks for the post!

Katie.
x

Hi

You are an inspiration to us all you are a very brave young lady
I wish you well in the future

Love
Tina
xxx

My old oncologist's first words to me were "Well, you've got a 70% chance" - and then when he discovered that they had misdiagnosed me he said, "We made a mistake. It's not scale 2, it's scale 4. You've got a 20-30% chance." I told my brother and he explained this didn't mean of surviving for the rest of my natural life, just four years. The oncologist then told me I would need extra RT (to the bits they'd missed out first time), put me to the back of the queue, and lo! when they decided it was terminal, his registrar told us "and I don't mean years, nor A year. I'm afraid you've got three to four months." We had not asked, we were just told.
What made me so angry (that I went off to another hospital) was that a year to the day he said this I dropped off an anniversary card. I had had no contact from them in between. This however generated a letter, in which my oncologist mentioned casually that of course "10%" of people survive a bit longer than the prognosis I had been given. I felt really angry that they had not bothered to mention that the previous year. We presumed we had been told 100% the truth, didn't have the dream holiday because we thought by the time I'd got my passport I'd be too ill to go. Relatives spent a fortune getting last minute plane tickets as we thought I'd be too ill to see them shortly. I lost my job. We suffered enough stress to kill both of us!
I just think that some doctors have just decided they are a law unto themselves, and can treat patients how they want, say whatever they like - because hey we should be grateful that they are prepared to treat our horrible diseased bodies at all.
It is a strange and terrifying new world when we are thrown into this situation, but the first time we encounter this, we just think that everyone is being treated the same. I very much admire you Julie for the way you fight for your husband. I am certain that if I had still been with my ex, a lawyer, this oncologist would have treated me very very differently. We do not even have a level playing field here in England, never mind in comparison with Europe.
xx Penny

Hi,
I watched a lot of the games, and to was inspired, I was fortunate enough to work on both the Sydney and Athens olympics and looking so forward so much to going to Beijing until my illness tripped me up..But watching such inspirational achievments, and even though I`m probably past my sell by date I`ve decided 2012 London...will be My third games.(even though it`s just London). Curious to see the opening ceromony..
red buses..pearly king and queens..giant cockles running around and of course rain..LOL
not to be missed.

Adrian

Penny, what an experience! I know I've heard its a 'rule of thumb' that oncologist are not picked for their bedside manner (maybe we should start a separate thread here on 'Things my oncologist told me...' in terms of tactlessness etc), BUT, I basicaly hold the opinion that I'd rather the onc were GOOD at his job than NICE at his job - ie, I don't mind them being brusque and 'off' etc, providing they give the best treatment they can.

But, that allowance doesn't run to them either telling you things you haven't asked them to say (and surely one of the first things they should aks you is 'how much do you want to know, and I'll be guided by that') and, far, far worse, telling you stuff that is either NOT TRUE or, as in your case, CRITICALLY INCOMPLETE (ie, that there WAS a chance of beating that prognosis).

It just shows how much we have to try and prepare ourselves by way of making lists of questions, or challenging what they say etc. eg, if you'd asked 'OK, so definitely only a few months then - 100% sure, no exceptions etc' then MAYBE they'd have said 'oh, well, ther's always a very slim chance, but don't bet on it'....

I know they must treat a very hard line between not giving a patient false optimism, and being TOO pessimistic, but again, surely the key point is that they MUST ask first if you want to know!

I do wonder, sometimes, what makes them like that. Is it arrogance, that says 'Me doctor, you patient, I pronounce life or death over you'? Or is the opposite, intense frustration that they CAN'T save your life as they have been trained to do? Or is it the 'familiarity of contempt' business, whereby they see dozens, possibly hundreds of patients, and so many of them are 'doomed to die' that they just get completely blase about telling the next 'walking corpse' who comes into their office....

I wonder, too, whether doctors who have themselves been affected by life-thretening conditoins, or had their family so affected, or even lost, are a lot more sensitive about it all???

I guess something else we have to take away from all of this is that it's only an opinion, it's only an opinion from one person, and we don't have to believe them!

I happen to be re-reading The Secret Garden, after the film was on TV a while ago, and there is a wonderful line that Mary, the stroppy little heroine says to Colin, the boy whose been brought up to think he's going to get a hunchback and then die before he grows up. And I've really taken it on board.

Mary says: "If they wished I would die, I wouldn't."
So there. Just to spite them!

Very pleased to hear your sent that card to your onc!

Best to you, Julie2