telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/23/hbreast123.xml&page=3
Cecelia. x
I am hopping mad. So the article says:
‘Yes, most women over 45 to 50 who get breast cancer now will have a "chronic’’ form of the disease.’
Well what I know is that 35 women are going to die today of breast cancer and 35 more tomorrow and the day after and the day after that, (12,600 in a year) and most of them will be women over 45, and the ones who are younger will be dying for the most common reason for younger women…breast cancer.
Yes many women survive breast cancer and many live much longer than their mothers did, but this is still a terribve disaese that is costing lives prematurely. This 58 year old don’t have a nice chronic kind of the disease.
Jane
Hi Jane
I agree with you. And the article has a patronising tone to it. I’m glad it has sparked debate. A chronic disease could be considered Crohns or something relatively controllable (sorry to Crohns sufferers but I’m sure you understand). This is a killer disease, as you say a “chronic” disease doesn’t kill 12,600 people per year.
Cecelia. x
Maybe I am a bit odd (!)but I found the article very uplifting. I think it will give hope and reassurance to lots of women newly diagnosed .
This is very much the line my oncologist takes. He says tha the majority of bc is cureable and we need to acknowledge that to stop our children living with the fear and taboo that our generation has. That said it still petrifies me !!
However I think if I had read that when newly diagnosed I would have been very comforted by it as at the time I craved any kind of positive reassurance.
I know everyone feels differently but surely we should be celebrating the advancements made both for ourselves and future generations.
Love Alise
Hi Alise
I think I can see both sides of the arguement, I think the disease should be treated as the serious disease it is but awareness of new treatments and breakthroughs can be nothing but uplifting. It’s such a learning curve when you are diagnosed, all you want to hear is good news and articles like this can certainly give you all the hope an optimism you need. I didn’t know anything about breast cancer or the positive breakthroughs they had made until I got the disease myself. That said, it is still a killer disease for thousands of women every year and those cases should not be underestimated or forgotten about.
Cecelia. x
The way to deal with taboo is not to tell stories and half truths but to be upfront and realistic, and to tell the many differnet kinds of stories about breast cancer…good and bad… in as truthful a way as possible. Let’s not over dramatise cancer or smother it with metaphors, but lets not pretend breast cancer isn’t still a disease which kills. It does.
Yes in future the hope is for a totally manageable disease but that future is not here yet.
Jane
I do not consider breast cancer to be a chronic disease. In the future that might be so but to say that it is trivialises what is a bloody horrible disease that kills. Yes there are better treatments than there were for our mothers/grandmothers. This is re-assuring but I am afraid that 35 women a day is no evidence of bc being a chronic disease. Alise I too take comfort from these articles and understand that we need to have hope, but deep down the reality is that too many women die from bc. Wish it were not so, oh how much I wish. Articles like this make it difficult for us as lots of people have said to me Oh you look so well, has the treatment worked. I had no idea myself before dx that bc couldn’t be ‘cured’. I had no knowledge of recurrence, mets.etc. It was like a horror story unfolding but that’s another story… I wish you all well love Eileen
I think I have maintained a positive attitude towards my treatment and recovery because my mum and “second” mum have both had breast cancer, had their treatment and are getting on with their lives five years later. Whereas my husband has found it very difficult as all those members his family who have had cancer have all died and he therefore associates death in every case.
What I didnt like about the article was where Mr Chan said "Most women who have a recurrence do not discover it at a special appointment; they feel unwell, see a GP and come back to us that way.‘’ Never at any time has the cancer itself made me feel unwell, my breast was tender thats how i found the lump but i was never unwell. The treatment certainly made me feel unwell!! Does he have any clue what he is talking about?
Feel better now got that off my lopsided chest 
Ju x
I too can see both sides of the argument. I think it is good to be positive and knowing that so many have survived has helped me through the past two weeks since I was diagnosed. However, the comment re unnecessary screening worried me. I almost did not get my lump checked out because I thought the hospital might think me a hypochondriac, as I had been to the hospital with a small lump a few years earlier, which turned out to be nothing. This sort of comment could lead to people feeling that they will be considered over dramatic. As it happened I was diagnosed with a grade 1 tumour. I could so easily have left it longer. I am so glad I didn’t. I agree, the positive results should be publicised but not at the risk of trivialising the disease. People can only be helped if they seek help in the first place and if breast cancer is not seen as the killer it can potentially be there is a danger that it won’t get picked up early enough.
Julie N
Ok, I know I should READ the article before I comment but my initial thoughts are that the older you are when you get a disease - any disease - the more appropriate it will be to call it ‘chronic’, simply because something else is just as likely to kill you.
I suspect the statement may also come from the fact that breast cancers in post-menopausal women have more of a tendency to be low-grade and slow-growing than they do in pre-menopausal women and asre therefore less likely to metastacise.
It’s great that more and more woman are surviving the disease but it is important to stress that a significant number don’t.
It’s late now and I need to go to bed. I promise I will read the article tomorrow and give a considered opinion.
Nighty night!
Lola
I agree with everything that has been said re this article.
What I find most astonishing about the whole debate is that people are still talking about breast cancer in the singular. There are breast cancerS not breast cancer. This is what these doctors should be trying to get across and what the media must grasp. As somebody who produces research I find the lack of rigour amazing. I dont know about you, but I am tired of people telling me the latest cure all headline i.e. you just need Tamoxifen or whatever. Not that it is these people’s fault, they just read the papers and that is how it is presented. I seem to spend my time educating people about breast cancer!
Until you actually get breast cancer, and I include myself in this, there seems to be no idea that breast cancer takes many forms, not all of it responds to hormone therapy, or Herceptin, sometimes it has already spread, some people have IBC etc. etc. From my own reading of the papers in the time before BC, I thought it would be a real advantage to be her2 positive as I would get Herceptin. My onc put me right on that one - although Herceptin has I think put it back to a level playing field and is very useful if you develop secondaries (I think, Im still learning)! As people like JaneRA are saying there are some cancers which are triple neg. so these so called wonder drugs just dont work on them!
Sorry, for this rant but this has been bugging me for some time!
Pauline
I agree with all the above comments about the article. ‘Chronic illness’ implies asthma etc, it’s almost like they’re trying to spin breast cancer into being something that isn’t a terrifying and potentially fatal disease.
What is chronic 1 year 2 years or acute 3wks??? After the chronic bit comes the acute bit…
Hopping mad like the rest of you all
Yes, I too am livid to the point of incoherence. In my own case I had no real fear of the surgery or the other treatments I had. Nobody I came accross seemed to be anything other than nervous of the chemo or radiotherapy. The profound fear I and others being treated at the same time as me had, and have still after 4 years, is of dying early of a horrible disease. I was eternally grateful that the regime I had was tailored to me and didn’t make me feel too awful. I was aware that I was in a system designed to make my treatment ‘journey’ as easy as possible and was grateful for that too. I am very aware that my treatment was and is a world away from that of my mother and her sisters many years ago. None of that takes away the likelyhood of my cancer returning soon. I’m still unlikely to be alive for my 56th birthday according to statistics. I’m also very sick of beig told stories of the importance of screening and ‘catching it early’. I tried. Screening and ‘catching it early’ don’t always go hand in hand. So on my tombstone am I supposed to write “Died of a chronic disease, screening didn’t catch it early”.
You can tell I’m spitting bile here.
While I agree that it is reassuring to read articles like this particularly when first diagnosed, I am obviously not a typical post menopausal patient. My diagnosis was grade 3 HER positive so very aggressive. It was also diagnosed as a result of the national screening programme (surely not the unnecessary screening referred to in the article?) so it was small and had not spread to the lymph nodes. Still, because of the pathology, the treatment is/was surgery, chemo, rads, Herceptin and Arimidex. I am already fed up with the well meaning comments about breast cancer being the best sort to get and tales of women with the same illness as me (with all the variations of grade, stage etc etc, I somehow doubt that many have exactly the same.) I manage to smile and not reply with the fact that my Mum died of this, because her diagnosis would not have been identical to mine either. I think that this article will lead to more of these reassuring comments, which are really hard to take especially when going through this long and nasty treatment!
Some chronic diseases also involve very unpleasant treatment and I do not want to make light of them in any way, but to make out that all breast cancer in post menopausal women is chronic is plainly wrong. I wish I had a low grade cancer, but I haven’t!
Thank goodness for this forum where I feel safe to have a rant!
Best wishes to you all
Anne
When I first read the article I was reassured ,even though with a triple neg 2cm tumour,that was naieve to say the least.I’m 63 now and through chemo ad rads now in triple neg limbo which is a scary place.I will spend the rest of my life in some degree of fear and no well meaning article can change that.A chronic disease is not a cured disease it is ongoing,changing we have to be vigilant however good the prognosis.But if ‘some degree of fear’ turns to constant terror then bc wins from the outset and it doesnt always.Lots of people die and lots survive for many years even triple negs.I am unusual in being triple neg at my age but its not the worst it could be.I will not spend all my days quaking.
Taking the positive side of Mr Chan’s comments, I feel that we should recognise that treatments are getting better. This is very helpful to our psyche. Yes, our perceptions of cancer have been formed by our mother’s generation and that most women over 45 – 50 still perceive breast cancer as a potential killer. But it is treatable. The general public needs to be educated to this in order to dispel the damaging perception that breast cancer spells instant doom, because it doesn’t.
Most of us know that approximately 43,000 women will get breast cancer yearly and approximately 35 women a day die from breast cancer. However, I only knew the figures after being diagnosed with the disease. Prior to that I had no idea. I don’t think I am alone in not knowing this.
Therefore if I put myself back into my “thought mode” before having the disease I did not know that so many ‘young’ women (ie under age 50) got BC and I most certainly did not know the death rates. I also did not know that approx 8,000 younger women would get breast cancer because my GP told me it was rare in women under 50. This again is how most of the general public have been educated in seeing breast cancer – a disease for the over 50s. I now know differently. Some younger women are still finding early diagnosis difficult to get addressed – I know this from my own campaign efforts.
To consider down-grading breast cancer to a chronic disease from a killer disease would undermine the perception of the seriousness of breast cancer and would be a catastrophic move. What we need to be aware of, and most of women with breast cancer are, is that treatments are getting better and women are living longer but we are not at a stage where we should alter the view of it by the general public with headlines down-grading breast cancer on a scale from killer to chronic.
Regards to all.
Jeannie
Also hopping mad. Not glad to see comments from BCC endorsing this article. I would be delighted to be considered ‘chronic’ but my hospital still classify me as ‘terminal’. I was diagnosed stage IV from the beginning, two years ago last Friday. I can’t tell you the number of women I have known, met, who used this board, during the last two years, who are now dead, the most recent being only last week. Many of us do not post the reality of this disease here for fear of scaring the newly diagnosed. There may be many new treatments in the pipeline but they are not emerging quickly enough for many of us. You’re likelihood of developing secondaries is not linked to age, hormone status or any of the other factors mentioned here. I know women with every history quoted who all have ‘terminal’ breast cancer.
So I believe down-grading breast cancer to the status of chronic is extremely premature, and though I would love it to be the truth, it just is not so.
Hoping (but doubting) to see my 50th birthday.
Jenny
(aged 47).
Another 40 something who’s hopping mad.
Like Jenny I have often decided not to post hard facts but am also dismayed to see BCC comments in this newspaper article. Page 2 of the article mentions 70-80% will survive. If anyone wants to know the truer picture it’s tucked away here on this website. (I won’t post it here.) On the homepage click on ‘‘Breast Cancer News’’, scroll down to page 3 of News Releases for ‘New voice for advanced breast care patients.’
70-80% is a stat so often used and quoted but the stat is including women like myself and Jenny, yes still alive but with metastases.
Well I’m all for hard facts and the figure tucked away in Breast Cancer News is that half of women with early breast cancer will go on to develop advanced disease.
I’ve reread this article several times since it appeared and each time feel renewed friustration. I agree that media headlines about ‘killer disaeses’ are unhelpful. I also don’t like ‘Pink October’ and the commercialisation of cancer with goes with big corporate breast cancer charities running strawberry tea bonanzas and fashion shows of happy survivors. But I’m fed up with spokespersons from charities and random doctors pretending to speak for women with breast cancer. We have our own, very diverse voices.
I don’t like the patronising tone of the BCC spokeswoman who implies that women aren’t ‘getting on with their lives’ for ‘fear’ of recurrence of breast cancere. I am not ashamed of my fear. I’ll tell you what I’m frightened of. I’m frightened that i’m going to die sometime not too far away…perhaps before I’m 60…when I’d rather set my hopes on 85. I’m scared my disease (now a regional recurrence) is going to progress into other parts of my body. I’m scared I’m going to be tired and unwell for the rest of my life, as I try one treatment after another. I’m scared I’m going to become very ill, in pain, be dependent and a have a drawn out and unpleasant death. I make no apology for being frightened.
I also live with hope…hope that the good luck I’ve had this far…getting 3.5 years from initial diagnosis with ‘not very chronic’ cancer will continue…hope that I’ll continue to have sunny happy days and laughter, hope that the process of dying with this disaese might indeed be delayed or halted…hope even that ‘death may not be the worse thing.’ Fear has walked alongside me for a while now…some days and weeks its very prominant…as at the moment as at the end of the 13th cycle of chemo I’ve endured…I wait to know in a few weeks if its worked at all. Some days and weeks the fear is just a shadowy companion and cancer isn’t quite real in my life. But don’t belittle my fear, or any woman’s fear who’s had cancer.
Breast cancer wasn’t a central part of my life when I was diagnosed at the very average post menopausal age of 53. None in my family but like any woman I knew women who’d had breast cancer and I’ve just written down the names of those women and what happened to them. In October 2003 I knew 12 women who had breast cancer. ‘Knew’ in the sense that they were either friends, or the mothers of friends, or very close friends of my very close friends. A broader sweep of my aquainatances would have doubled or trebled that number. And I’ve not included Ruth Picaride whose Observer colums I knew well…she survived about a year after diagnosis and died in her early 30s.
So what of the 12 I knew?:
4 had died ( 2 of the mothers aged approx 60 and 72 and two of the friends of friends. (age 45 and 50ish)
2 had secondaries and have since died (freinds, both aged 50ish)
1 had primary bc and she’s dead too (friend aged 40)
5 of those women still live: 3 have had a second primary…including one of the mothers now in her late 70s, 20 plus years after intial diagnosis…only this time aggressive her2 and is been a struggle to get herceptin becasue she’s 70+)
1 woman has lived 18 years since her original diagnosi (5 since regional recurrence)
I woman remains out of the 12. still in remission, about 10 years after diagnosis.
Another interesting thing about my 12 friends is that 10 of them survived over 5 years and so they all appaear in the triumphant 80%+ plus survival statistics.
This is all anecdote…just a story of my freinds with breast cancer at the time of my diagnosis. I bet though that if you try a similar exercise you’ll get similar results.
I am not in the biisness of frightening people but I am weary of the myths and metaphors and half truths and damn lies and statistics, and the cheery fluff, which obscure the living truth and tragedies and reality of this disaese…a nasty diasese among other nasty and nastier diseases of the 21st century.
Jane
Jane