Clarrissa Luard (deceased) - a former Mrs Rushdie

Clarrissa Luard (deceased) - a former Mrs Rushdie

Clarrissa Luard (deceased) - a former Mrs Rushdie In the Sunday Times magazine today, her son Zafir, says of Salman:

" Dad’s always been very supportive. he helped me when I was 15 and mum was diagnosed woth breast cancer. She was given the all-clear after 5 years, then it came back very viciously three weeks later. That was hard. But dad was there."

Now I believe that intelligent articulate families choose their words carefully and I don’t think that the “all clear” message was somehow dreamt up by anyone in the family. Some health professional said it and gave false hope and unrealistic expectations for the future. Part of what made it “hard” for Zafir seeing his mother die suddenlu, might have been because he had no preparation believing the risk was over? That part, is just my speculation.

I’d like a New Year’s Resolution by Health Professionals, Cancer Charity workers, health Journalists etc. to :

*TOTALLY STOP using the phrase “all clear”
*TOTALLY STOP implying that 5 years in remission is a magically landmark, and
*admit that ANYONE who has every had breast cancer still has some risk of local recurrence or even secondary breast cancer at some stage in the future.

A strong piece of publicity from BCC about some of us with secondaries would strengthen the message. As it is, the life threatening risk of secondaries and dealing with it when it happens, receives considerably less attention from BCC than talking about cosmetic stuff like wigs, prosthetics etc.

I agree When I had my first check up after treatment with my surgeon I asked him if I was in remission. He said that “remission” is not a word that he would use to describe my situation. All he would say that I had my op,then chemo, then rads and that was my “belt & braces” or “insurance policy” that everything had been done to rid me of cancer but he said that he couldn’t say I was clear.

I get the impression from the majority of postings that that is all we are told because nobody can say. So where does it all come from, media I suppose who do not understand what they are talking about.

I know that I shouldn’t be upset that someone is given the “all-clear”
straight after treatment but is this right, are they actually told this? I’m sorry but I don’t really think so.

I agree too I think it’s outrageous to tell anyone with breast cancer that they are ‘all clear’. Even if, as I have, you have had surgery, chemotherapy, radiotherapy and a course of Tamoxifen, no oncologist could guarantee that it will not recur after 5, 10 or even 20 years.

I am now 4 years post diagnosis and am anticipating a barrage of statements such as ‘So you’re all clear then’ or ‘If you’ve got to 5 years, you must be cured’, if and when I get to 5 years! Groan…

Nobody has ever told me that I’m “all clear”, but I think if they did, I would nicely point out to them that if I was guaranteed to be “all clear”, I could give blood and I can’t because the National Blood Transfusion Service doesn’t want it because I’ve had cancer.

colluding with myths I think intelligent articulate families collude with myths about breast cancer as much as anyone else.

I’m not sure that health professionals do use the term ‘all clear’ but they use other euphemisms which some people with breast cancer and their families then choose to call ‘all clear’. There was an example on the site from a woman last week who said her consultant had told her ‘he considered her cancer free’…this 9 months after a grade 3 diagnosis. She interpreted this as ‘all clear’, and a couple of women leapt in to defend her right to call herself all clear even though several of us pointed out that this was not possible.

I agree that far more attention shoudl be given to the reality of breast cancer, and the fact of recurrence, secondaries and dare I say it that 12,600 women die of breast cancer annually. There is so much silence about these facts…as though to talk of them is letting the side down…that’s the side that thinks the main problems with breast acancer are losing a breaat, and wearing a wig for a while. Thanks for starting this thread Holey.

Jane

Good on you Holey,

I grind my teeth in frustration everytime I hear that phrase “all clear” on the news, in the papers, spoken by acquaintances etc.

Maybe the medical profession do not necessarily use those exact words but they come pretty close to it.

I consider myself lucky, grade 2, WLE, full auxilliary clearance but no node involvement followed by RT and now Arimidex. My Onc did not use the phrase “all clear” but did advise that he hardly ever sees any recurrence or spread of BC in his patients and that as I had good prognosis he did not expect me to develope recurrance or secondaries - I have learnt over the past 18 months not to believe everything I read or am told when it comes to BC.

I do not dwell on the worst possibilties for the future but I am aware of them and therefore vigilent, and that is all I can do, and like most of us, I refuse to let this damn disease stop me enjoying life to the full.

Having said that, I do agree that the subject of secondaries does seem to get swept under the carpert all the time and I do think that BCC should lead the way and be much more open about this. The need to educate everyone about the true facts of BC is still a matter which is so ignored.

Holeybones do agree about the all clear declaration. 6mths after mastectomy- 5cm and 2cm tumours- one of the oncs announced “I’m happy to tell you that you are now completely free of cancer”- knew he was an idiot and it must have shown in my face !
But what if I had believed him? Needless to say since 2001 when this hapened had other breast lumpectomy- lymph nodes galore- skin mets-bone mets -liver and lights am in blessed ignorance- enough’s enough! dilly

All Clear? - what Hi = I am 100% behind you holybones and the others, well said.

I get asked many a time if I am clear - I always say there is no such thing as ALL CLEAR - when you have been through any cancer. I dont believe either I am in remission.
I was diagnosed and treated for Breast Cancer - but as we all know - Cancer is a lottery - it can come back at anytime, anyplace anywhere.

So come on BCC - be the leader in this - run a Stop the ALL CLEAR campaign.

cheers David W

agree with holey Hi
I also get irritated with the all clear statement. Or the expectation that once treatment s over then thats it then back to normal and its all over. I have heard the phase “no evidence of disease” used by oncologists and this seems to describe this situation better. It is neither saying that we are all clear implying it won’t come back ,nor in remission which implies that its only hiding and will definatley come back. So I think we need a campaign to bring in this “no evidence of disease” phase for the medical profession and for the public.What does everyone else think.
Kay

Not recurrence I think it’s misleading to use the term recurrence. Shouldn’t it be re-emergence? If secondaries develop, the cancer hasn’t recurred because it was there all the time, perhaps dormant or suppressed, and at a later time it re-emerges. NED is a more accurate term.
I suppose that since many primary breast cancers do not recur- or at least more than half of N- ones, lots of women are really all-clear but there’s no way of knowing which ones!

Best wishes

Kitty

If not all clear than what? Ok – Perhaps all clear shouldn’t be used since it seems to upset so many people. However if an oncologist, with all his training and experience says, “I consider you cancer free. Even 9 months after a grade 3 dx – what are you expected to think?
If you don’t have cancer - you don’t have cancer and can consider yourself to have been given the all clear. Well that’s how I interrupted his message.
I might develop cancer again in the future - but for now I’m cancer free and very happy to be so.
I wish I could get the same message about my immune system – that it will never turn on me again.

Hope you all have a happy Christmas and a healthy New Year

Glo

NED better terminology As we have discussed this particular topic many times under different threads, I just wanted to add my ‘piece’. I was originally dx in 1999, had all the normal treatment etc., and in early 2005 was told that hospital policy was to ‘discharge’ patients after 6 years, apart from yearly mammos. The term ‘all clear’ was never used in my breast care unit, but the surgeon did use the term NED (No evidence of disease). Shortly after this last appointment I did then find another lump on the same (reconstructed) breast, which turned out to be another cancerous lump (or local recurrence). This time round it involved far more major surgery and total axillary clearance with chemo and Arimidex - for here on in.

The surgeon did say he was somewhat surprised, as with my type of cancer they would have expected a local recurrence earlier, if it was to happen. However, as everyone here has said, BC is so unpredictable, it can come back many many years later. In my case, it may well have been lying dormant and not shown up on any bloodtests, although all my lymph nodes were affected.

My latest bloodtest have been all in the normal range, so again they are using the term NED, but I am going for far more regular check-ups and have been told that I will not be ‘discharged’, but just monitored.

Anyway, to all of you who have got ‘over’ the treatment and are feeling well, enjoy!

Birgit

thoughts and a message for Glo Hi Glo,

Sorry if you feel I have over personalised this by referring to your experience but I think it so illustrates the point that Holeybones was making when she started this thread.

I think the fact that your oncologist told you he considered you cancer free is precisely what some of us object to in health care professionals. I imagine that your oncologist thought he was ‘being positive’ to encourage you. Now I think we all indulge sometimes in what I would call ‘necessary fictions’…ways of giving ourselves hope which may also involve telling ourselves half truths. For example, three years on from diagnosis and still NED (the term I use) I often tell myself that cause my cancer being triple negative and having loads of nodes was more likely to recur very quickly and it hasn’t that now I’m OK. But my intellect knows I’m not…and I never will be clear, and in my case I will still probably get a recurrence sometime in the next few years.

As inidividuals we all adopt our own coping mechanisms but thats quite different from the responsibilities which I think consultants and other health professionals have not to tell porky pies to their patients. After all consultants do have considerable power and if they say things like ‘I consider you cancer free’ then yes we may think that means we’re in the ‘clear’. Then the media gets hold of ‘all clear’ messages and people are misled. Its not so long ago that health care professionals didn’t even tell their patients they had cancer for fear of ‘upsetting’ them, (very recently in France) and I think that oncologists who tell half truths carry on this tradition…and they shouldn’t.

I think public perceptions of what breast cancer is about matter; I think facts matter, I think openness and reality matter more than myth making, silence and half truths.

I’m not personally ‘upset’ to hear about health professionals using phrases like: ‘cancer free’ and ‘all clear’…I’m angry at such nonsense.

So yes please a campaign for NED’'no evidence of disease."

I think the points about recurrence being inaccuate are interesting too…because yes its not that cancer ‘comes back’ but rather that it never went away. But ‘re emergence’ is a bit awkward, and ‘re…waking’ not really appropriat.

How many women who have had primary breast cancer are told of the symptoms of metastic spread? Too few I suspect. I think health professionals could spend their time more profitably informing all women who have had a primary diagnosis what to look out for…rather than misleading patients about being ‘all clear’ or ‘cancer free’.

Jane

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for Jane Hi Jane,
Thanks for your post. I admit I did feel a bit got at - however I now understand were you are coming from.
I would totally agree with you about educating people about the symptoms of metastic spread.
I know I have never seen or been told about what to look for. Well not surprising, if the doctor can tell me I’m cancer free – he has no reason to tell me what to look out for.
I also believe and hope he had more than giving me positive encouragement for his statement. At dx I was to be on Arimidex or Tamoxifen for 5 years. The Arimidex did not agree with me – how ever there was no pressure to take any other hormone inhibiter. The choice whether to or not was mine. I hope if I had made a bad decision the doctor would have explained the importance of further medication.
My crazy immune system has caused me problems than the primary breast cancer ever did and just as likely to kill me.
However I will certainly query his statement at my next check up – in the mean time I will support a N.E.D campaign. This seems to be a sensible statement for all of us who have had cancer.

Glo

Well said! Well said Holeybones and everyone else!

I know there are thousands of us who scream with frustration every time we hear the phrases ‘all clear’ and ‘remission’.

When I was diagnosed the first time I remember asking one of my oncologists ‘So do I ever get an all clear then?’ He replied ‘If it hasn’t come back in 20 years then I’ll give you an all clear.’

Of course he was too right - had another primary in the other breast 4 years later (at the age of 35.)

Maybe if we all get together we can persuade health professionals and the media not to use these misleading terms!

Helen

Agree! My friend was recently told by her oncologist that she “wasn’t going to die” of her cancer. She had high grade tumour with nodal involvement. I hope I was able to conceal my surprise as this very vulnerable person was thrilled by this, understandably and I didn’t feel like being the one to suggest any different. Maybe sometime in the future we can have that conversation. But really, what was the point of that remark? Best wishes to all xx

Cancer Free I have only know one person who was given the “you are now free of Cancer” this was after intense Chemo & Radiotherapies. This person was being treated for oesophagus cancer by the way - when given the news his family was extatic - telling everybody they had been given the “all clear”.

3 months later this person died.

When questioned the experts said that the Cancer Free statement was for after the treatment only, the cancer came back in vital organs, spreading too fast to be treated further.

David W

And yet, there are those for whom it never rears its ugly head again. We must not lose track of this. Some of us will be lucky, but as this is such an unpredictable disease, we cannot say whom.

Mcgle