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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
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
Abandon hope all ye who enter here Reading this thread, and the many similar ones on these forums, is like being hit repeatedly over the head with a very very blunt instrument.
I would be very surprised if Glowormdancer,the person who initially raised the question of whether or not it was possible to be \'all clear\' of cancer within 9 months of treatment ,was not aware that it probably wasn\'t.
I also think that there was a plea for reassurance in her post. I tried to indicate this when I quoted WB Yeats \'Tread softly for you tread on my dreams\'.
I was hoping that this might encourage people to post in a gentler way in response to some of these queries. Yes, we all know that it is impossible to say that someone is cured of bc before they have died of something entirely related and without showing any evidence of bc. BUT we also know that many, many people do live to die of something else. They were to all intents and purposes cured of their bc. Somehow this gets forgotten in the rush, on these forums, to be brutally \'honest \' whatever the consequences to the reader.
I wouldn\'t be at all surprised if the two people who posted to encourage Glo to be optimistic were not simply responding to the heavy atmosphere on the thread. They probably don\'t believe that it is simply a matter of belief as to whether one is cured of bc or not anymore than I do. But I don\'t believe that there are no grounds for optimism for Glo or anyone else either. The fact is that no-one can predict the outcome of bc. This should be borne in mind when posting gloomy \'truths\' and \'facts\'.
Look after yourself Glo, take heart from what your doctors said and enjoy life.
Best wishes
Roisin
I added my post last night but must have done something wrong as all that is printed is my name.
Well said ladies I very much support abolishing false information. Hopefully BCC can lead the way. It amazes me that well educated people are so badly informed and I do blame the media for portraying the all clear message.
I visited my dentist last week and while he was going through my list of meds he said brilliant only another year and you\'ll be off the hook.
Well I did my best to pass on the actual facts that on your 5th anniversary no magical cleansing takes place. This was quite difficult with his hand, mirror and picking tool in my mouth.
I strongly believe that ned is a much more acceptable term.
Best wishes
Linda.
On a totally trivial note, I think it\'s ironic that we all aim to be NED. In Scotland, we don\'t use the term \"chav\", we use \"ned\" (non-educated delinquents).
Here\'s to delinquency!
Symptoms of metastatic spread? Hi
Apart from the usual checking ones breasts, there is often no way to tell whether one has mets or not. I know of women here who have been diagnosed with bone mets by fracture - no prior warning, and I certainly had no symptoms when I was diagnosed with breast cancer which had already spread to my liver. It really is not that straightforward, unfortunately.
Jenny
People deal with breast cancer in different ways. Some people regard themselves as all clear or cured after breast cancer treatment because that\'s how they genuinely feel and that\'s what gets them through it. I regard myself as cured because mine was caught and treated early and I had no nodes involved. But I know it could come back and I recently got some back pain checked out - turned out to be wear and tear, but I\'m glad my surgeon decided not to assume anything and investigated to be sure.
As several people have said on this thread, it is the media led assumption that once you\'ve been treated for breast cancer, you\'re better, that is wrong. If breast cancer stops being regarded as a serious disease (and I think some people already don\'t regard it as that serious), it makes it much more difficult for better prevention and treatment to get the right level of focus.
There\'s no point in living your life just waiting to die of breast cancer - for many, it will never happen and death will be of causes unrelated to breast cancer. So we all might as well live optimistically, if we can. However, you can still do this, yet be critical of the way that the seriousness of the disease is minimised in the media (and by some doctors) and speak out about it. It doesn\'t make you a pessimist, just a realist.
I guess this is a modern version of the time when people with cancer weren\'t told they had the disease so as not to frighten them. Now \"all clear\" and \"cured\" are used so as not to frighten breast cancer patients and people who are worried about getting it.
Agree with optimism Roisin
Thank you for your kind and very thought provoking post. Yes, we must indeed tread softly... I think the problem is that we all know or know of people, who have had recurrences, secondaries/died of BC and this is obviously very upsetting. I think the human mind does have a habit of \'filtering\' out really heavy or bad news and we often think we have heard what we want to hear. As long as were are all realistic about this disease, not dwell on the \'possibilities\' of bad outcomes and just get checked regularly, there is no real reason not to just get on with our lifes. And if we don\'t understand something, just ask, ask and ask some more!
On a very positive note, my mum is now 84, having had BC over 22 years ago (sadly it runs in our family), and as far as she is concerned she will probably die eventually from something totally unrelated!
My oncologist said to me yesterday , when I did ask him about this whole \'all clear\' business (and I wrote this down): \' At this moment in time there is no evidence of cancer\'. Now I could obviously interpret this any which way, but what he was saying is : \'there is nothing at the moment, but I can\'t say to you that you are all clear.\'
So, Glo and everyone else out there, take heart, enjoy.
Birgit
Recurrence? I was seen 2 weeks ago in clinic by my original bc surgeon (haven\'t seen the Onc since finishing chemo and rads) for an enlarged breast - after a mammo, u/s and biopsy he said it was lymphodoema. I did take the opportunity to ask him how I will be monitored in future. I found his reply interesting - he said I will be monitored yearly in the bc clinic for 9 years from diagnosis, and then, god help me, if I live long enough (I am 62 yrs) I can request 3 yrly mammos. He said the guidelines now are that women up to 70 yrs old can have 3 yrly mammos without request, but beyond that, it is up to me to request them. In the meantime, he assured me if I have any problems with my breast, bones, or lungs, I only have to ring my bc nurse and she will get me an urgent appointment. I feel very comfortable with this situation.
He has never told me I am \"cured\", nor NED, because I don\'t believe he, nor I, think I am. He is a very honest, yet shy guy. His best advice to me was: \"Just go and get on with your life, but we are always here for you if needs be\". I have tried to live with this philosophy, and it works for me. I know when I have a problem, and how to get help, but in the meantime I refuse to be a victim to this disease. It is ironical to think back to when I was first diagnosed and he said to me: \"Liz, you will more than probably die of your Crohn\'s than breast cancer\" and his words have given me great comfort since then. I like to think he was giving me hope and encouragement, which he did, and I am doing fine - got my weight up from 7 st. to 8st.8lbs, although still very tired, but as we are retired, we can live with that. There are some great, caring and compassionate bc surgeons out there - just wish the Onc had the same disposition.
One of the posters to this thread stuck a cord with me - when my father was dx with colon cancer, admittedly some 30 years ago, the doctors told me first, before my mother, as they wanted to know how she would react. They told me nothing could be done as the cancer had already spread to the liver, kidneys etc. and they just had to close him up after exploratory surgery. He sadly died some 6 weeks later. My mother reacted as if my father had the bubonic plague - told me not to tell anyone my Dad had cancer! Those were dark, sad days, when the word cancer struck terror in people\'s hearts, particularly those of my elder generation. Now, I feel I can talk openly about the fact that I have cancer and hope that people who have it, will seek help earlier in the progression of any kind of cancer. I am sad that I didn\'t have the knowledge about cancer that I do now, as perhaps I could have urged my Dad to get help earlier.He told me the GP said he had \"colic\" and I threw a hissy fit - told him only babies get \"colic\". I knew he was bleeding from the rectum, but as I have Crohn\'s and it can be a familial disease, I thought that could be the problem. Cancer never entered my head then. Gosh, hindsight is a wonderful thing - pity it doesn\'t bring foresight along with it.
Liz.