Survivorship survey

The Cancer Reform Strategy is due to be launched on December 4th. It is due to have a section on ‘survivorship’ and will probably acknowledge the after effects of a cancer diagnosis (financial, emotional, and physical).

The term is a complex one which has developed from America, where it is very popular, however Breast Cancer Care wants to determine whether, this is an appropriate term for our clients or whether it excludes some – i.e. those with a secondary diagnosis.

In order to prepare its response to the Cancer Reform Strategy, Breast Cancer Care would like to ensure that it reflects the point of view of those who use its services and fits in with discussions amongst those affected by breast cancer in the UK.

Please help us by filling in the following web poll, it should only take about ten minutes and would be extremely helpful to Breast Cancer Care in planning our future work.

Complete the survey on line

The question on whether you consider you have a chronic condition is only meant to be answered by people with secondary breast cancer but you can’t close the survey unless you answer it

There was another question on whether you liked beyond cancer better than some other term and I didn’t like either but once again you had to select something. I don’t like compulsion

I didn’t like either phrase including the word “beyond” because both imply that at some point, breast cancer is something that is behind you.

For those in remission after primary breast cancer, I am thoroughly in favour of trying to pick up your old life and not thinking about it too much. However, you need to be aware of symptoms of recurrence and secondaries, so you seek help when you need it. Also, even if you remain in remission, you will find it hard to change jobs, buy insurances etc. for a long time after treatment is ended.

Obviously, if you have secondaries, it never is behind you.

One obvious word I would have expected to be covered was “remission” but it wasn’t there. Possibly “all clear” should have been there too (so we can say how little we like it).

I don’t want new words like “survivorship” imported from the US unless they are readily understood and serves a useful purpose. I feel “survivorship” fails on both counts. The cancer charities have enough problems explaining words already in use, without adding to the burden.

I don’t think the “Plain English” accreditation would not be given to information leaflets that included “survivorship”.

On the whole, the questionnaire was a good one and I am grateful we had a chance to express our views. I would urge everyone to complete it, but flag up any question where “none of the above” would have been your reply.

hi, i noticed that i couldn’t complete unless i ticked the secondary box, felt a bit bad about doing that, but i do think that we all sail in the same wind, be it physically or mentally, as far as i’m concerned, i will always have cancer, even though its supposedly gone, but i realise just how easily it could just come back, i never expected this, but its not a question of “why me” its more a question of “why not me” i would rather just have plain english, not some crap from the USA, but we are but a small voice i feel.

Just completed the survey. It was a bit tricky to do. I did not like having to tick a secondaries box as i am awaiting results and got freaked about it.
However i wanted to say i think the term ‘survivorship’ is absolutely awful and so typically American.
I looked in my chambers dictionary to see what it said and it gives a whole lot of stuff about survival of the fittest after the word survivorship. This is exactely what i thought when i saw the word. I can just see the Americans putting medals around peoples necks or badges like they have for the war veterans for how many years they have ‘Survived BC’ The word to me almost says we are in control of what will happen to us and if we survive for many years somehow we are better than those who dont survive.

it is difficult to think of a fitting word I dont like living with breast cancer, I hope i am not living with it and it has gone but none of us know. so i dont like living beyond breast cancer as i dont know if is still there lurking and beyond cancer is just too vague.

What i opt for is simple
Living with primary breast cancer
Living with secondary breast cancer

Hope this makes sense.


I have also completed the questionnaire.

However I think that BCC has insufficiently explained the reasons why the term ‘survivorship’ is now being used.

I attended the recent ‘focus group’ and discovered there that the survivorship agenda is being driven by MacMillan. In April Professor Jessica Corner and Professor Alison Richardson wrote a ‘Cancer Survivorship Breifing Paper’ for MacMillan’s Cancer Reform Strategy Patient Expereince Working Group. You can read this paper on:

MacMillan are calling for a National Cancer Survivorship Strategy(NCSI) so the concept isn’t going to go away! It will almost certainly be used in the December 4th announcement. So discussing whether its a good word right now is perhaps a bit late!

It seems that ‘cancer survivorship’ is being used as a collective term for ‘living with cancer’. Basically more people are living with cancer (estimated 1.2 million in UK) and there are concerns about the individual and social challenges (read problems) which this poses. Seven challenges identifed: better cancer support programmes; improved data collection; more comprehensive evidence base; getting people back to work; tackling the late effects of treatment; helping people to help themselves; and more support for carers.

MacMillan defines a cancer survivor as anyone not in active treatment or living with progressive disaese who has more than 6 months to live ( a redefining of ‘terminal’).

Basically the fact that more and more people are living longer after an initial cancer diagnosis…and there is also a higher cancer incidence as people are living longer…pose enormous individual, social and economic concens. The government has an agenda of getting people off benefits and back to work and I suspect that this is the real driver behind the strategy. (people under 65 who have a cancer diagnosis are 6 times more likely to be unable to work than those wthout a cancer diagnosis.) Already it seems that there is a tightening up of the special rules on Disability Living Allowance (DLA is a non means tested benefit which under special rules is paid to patients with a termional diagnosis not expected to live longer than 6 months. In practice, most people with a secondary diagnosis have been able to access at least the care component of this benefit even though many live much much longer than 6 months…I suspect the govt. wants to stop this.)

The language we use about cancer has a very important function in perceptions of cancer and in the way societies and governments respond to cancer (which is why some of us object to other terms used around cancer including all those happy clappy and fighting metaphors.) However, the debvate about survivorship has implications which go far beyond the mere use of anew Americanised word.

I think the BCC questionnaire will probably reveal that most people who answer don’t like either the word ‘survivor’ or this new concept ‘survivorship.’ But our objections will fall on stony ground as a whole new strategy is announced on December 4th which will probably use the term anyway. (Though actually MacMillan could easily change ‘survivorship’ to ‘living with cancer’ without changing one other word of its proposals.) Yes there is an urgent need to respond to the seven challeneges which MacMillan suggests…no one could probably object to them…but the detail of the response has crucial implications for us all. Watch out for the announcements on December 4th.


i’ve just read that Jane, thank you for putting that thread on, the part of that that i found quite distressing is where it says “for the remaining years of their lives” its probably just me, but i think thats bad



Questionnaire wouldn’t close when I tried to fill it in last night!!!

Same objections to the rest of you. I was very cross at being forced to choose bewteen two terms I would never ever use in a million years, and said so in the remarks box.

Being me, and slightly odd as usual (physically!!!), I also objected to having to choose between primary and secondary, because I am secondary treated as primary !!! Just goes to show how hard it is to pin anything down to a straight yes/no on this disease "!!! I chose primary but wish I hadnt if those other answers wont count.

There’s a wiki on cancer survivors

quote: This is essentially unknown among people with similarly devastating diseases, such as AIDS, Alzheimer’s, or heart disease.

I’d love to hear someone with Alzheimers describe themselves as an Alzheimer Survivor ---- NOT !

I am glad we are being asked, but will it make any difference to this terminology creeping into use? I am afraid how ever many people object, it will still be used and become assimilated into everyday language. I know I suffer from being a bit of a purist in language, I hate misuse and oftne the misappropriation of words but this one really annoys me.

I wonder how much it is connected with “You’re Cured”.

Thank you Jane for filling us in on the conference details. I was invited, but could not travel, so filled the form in via e-mail I too found the form slightly conflicting as you could not close it without ticking the ‘secondaries’ box. But the title ‘living beyond cancer’ had a completely different meaning to me. I interpreted it as meaning that there is life beyond a cancer diagnosis, be it primary or secondary! Just shows you how a word can be interpreted in so many different ways. To me it means, that yes, our prognosis is often poor even if we are NED (I had wide spread to all lymphs but am NED at present), but I try to carry on with my life as normal as possible, obviously within the restrictions of medical problems and permanent tests and drug treatment. To me the word beyond means, that there is life ‘beyond’ cancer, it is not all encompassing. But I agree, the survivorship term is so American and as Pamelap has said, do we hear from any other groups with permanent disability the term ‘survivor’? And when would you stop being a survivor, when you have a recurrence or are dx with secondaries? Do you then fall into a new category, and how many years from first dx are you a survivor? My mum is 84 and was dx at 60, so is she a survivor or was she just very lucky??? I think this debate may run and run, but as Jane has said, is probably out of our hands.


OK wrong head on here, but what does NED stand for?

thank you

“NED” stands for “No Evidence of Disease”. It is the term that should be used when many talk of the “all clear”. Nobody can be entirely sure that all cancer has been removed so “NED” is the target.

ahhh thank you Holeybones - a bit like NAD then. i knew it would be simple! NED sounds good to me, quite appropriate.

Hi Birgit

I said exactly the same as you on the form that I completed in how I interpreted ‘living beyond cancer’ - it’s about trying to live as normal a life as possible (what’s normal??!!!) and not to be defined only by our disease which, for some of us who have secondaries, isn’t always that easy to do.

My two pence. I find the whole survivor term very confusing. At first I thought that the whole cancer survivor movement was based on addressing the real long-term concerns of former cancer patients, but it seems to have shifted back to obviously worth goal of ensuring that more people survive cancer. I have been taken aback to see cancer patients with secondaries in the US described as cancer survivors, even though I try to remain optimistic about a cure. Still, you wouldn’t describe someone in the middle of a famine as a survivor of the famine just because they hadn’t yet starved to death. While some types of secondaries seem to respond to treatment, I know that I would be unlikely to survive a long time with my type (ER-,PR- treated with herceptin and taxotere for primary BC), so don’t see it as something chronic.

Personally, I would only describe someone as an unquestionable BC survivor if they are a decade or more out from an ER-,PR- diagnosis, since the latest research indicates that this type does not recur after that.

I mainly consider myself to be a former cancer patient or person who has had cancer.

It is not true that the term survivor is unknown for other serious diseases. If you google ‘AIDS survivor’ and ‘heart disease survivor’ you find loads of stories. If you google ‘Alzheimer’s survivor,’ you get very little, including an article pointing out that there are none.

Hi all
I am glad to see so many people replying to this survey. Lots of food for thought for them.

My main hate is the word survivor to me it just smacks of having been a victim.
I in no way see myself as a victim as I can do something about how I am treated.
I could only answer the question on Secondary questions on a ‘what if it was me basis’, its good to see those of you in that position give such informative responses.


sounds very like a book by Sharon Osbourne

Hi everyone

I went to Macmillan’s conference down in London yesterday and they were using the word ‘survivorship’ when talking about what would be in the Cancer Reform Strategy and I have this feeling that no matter what we say, this is the term they are going to use. Even the new Chief Executive, in his opening speech, talked about the Cancer Reform Strategy and said ‘survivorship will be included in it’


I have read this thread with great interest, and Jane your post especially rang many bells for me. It seems to me there is a real effort, supported by MacMillan and others, to ameliorate the cancer diagnosis, an attempt that I agree seems closely linked with the government’s desire to get cancer patients back to work and contributing to the Great God Economy as soon as possible.

I think this is disgraceful, and as someone with cancer who has paid into the government coffers for 35 years of my wporking life, I think I am entitled to some support if I choose not to work while I am undergoing treatment for what is, after all, a serious and incurable disease.

I hate the term ‘survivorship’ too and agree it has nothing to recommend it in terms of plain English either. As for ‘beyond cancer’ - what is that supposed to mean? No one is ‘beyond cancer’, for even those without a diagnosis may yet get cancer - after all, one in three get a diagnosis of cancer so to talk about being beyond it is just facile.