I understand your points Ian:
I think the one piece of FACTUAL inaccuracy you had a responsibility for correcting was the use of the statistic that people with lobular breast cancer have a 50% more chance of developing secondaries than those with ductal breast cancer.
Of course you cannot and should not correct opinions but I think you should comment on facts when they are blatantly wrong.
It’s been very interesting to read your comments on the Daily Mail article.
As has been covered in previous posts, there are some inconsistencies in the way clinical information was portrayed in the piece, and thanks to Emma P for providing the definitive line on lobular breast cancer.
Despite these inaccuracies, we do not feel it would be helpful or appropriate to write to the Daily Mail about this particular article which appears to have been placed by Cancer Research UK. The views expressed in the piece are from an individual, and represent her own interpretation of her experience, right or wrong, as does her ‘knuckle down and get on with it’ approach.
Where appropriate we respond to media inaccuracies, but rather than directly challenge the newspaper over pieces featuring personal beliefs and views, we prefer to take the approach of building good working relationships with journalists across a range of newspapers and magazines.
By creating this kind of link we are able to have greater opportunity to influence articles as they are being written, rather than after they’re printed.
We receive regular calls from reporters writing on a range of issues to check facts or ask for comment from ourselves or people affected by breast cancer on issues. We always look to provide the voice of reason, putting any new research into context of how reliable it is, whether a new drug is suitable for all or a specific group, as with Herceptin, or how close this new treatment is to becoming used in a conventional clinical setting.
And of course we are always working to promote the issues that we know those affected by breast cancer feel so passionate about – from raising awareness of the link between age and breast cancer risk, to publicising the work of our Secondary Breast Cancer Taskforce and the services the charity offers. It’s not easy but we work hard to encourage the media to look at a range of experiences.
We hope we’ve gone some way to explaining how the Breast Cancer Care press team works with journalists, and the steps we are taking to ensure that coverage is, as much as possible, accurate, balanced and reflective of the experiences of those living with the disease.
If anyone is interested in becoming a media volunteer, whereby they may be called on to offer their views and personal experience where appropriate opportunities come up then please contact us at
to complete a media volunteer questionnaire.
I am so pleased to see so much discussion on lobular breast cancer. But, I ask again - can we please have a designated topic for us lobular ladies on this site. It would make it a lot easier to find everything about breast cancer instead of having to use the search tab all the time. I have requested this when speaking on the phone to the BCC office. I know we are only 10%, but I agree that this is not RARE just under researched, and tends to get lumped (excuse the pun) together with all other breast cancers. I am nearly 3 years 'free' but actually dont feel that 'free' as have aches and pains which I always think are secondaries.
I would love to share a section with all lobular ladies, and in the meantime wish you all well.
Personally when i have written to the mail they just defend themselves, I think it would be good for BCC to write to them, you can live in hope they may concentrate more on getting their facts right before publishing the hundreds of articles they do in the year. Not holding my breath though.
Would the moderators lets us know if the press office is going to write to the press, in this case the daily mail... seems a good use of a press office to me and I'm sure we would all appreciate it.
Where are journalists supposed to get facts re BC from? Which cancer charities have taken informing journalists on as part of their remit?
Thank you Jane, Ann and Emma for clearing all of this up.
As a woman with advanced cancer, I live in the land of hope and I would love to see more targetted therapies that allow us to live longer WITH the disease.
As a scientist, I get excited by the developments in cancer research but I probably was 100 steps ahead of myself suggesting that recent and near future laboratory findings could be translated into therapy. Ah well....
PS Jane, great to have someone like you around with your finger on the pulse and your feet firmly on the floor.
I think one of things breast cancer charities should do is use their authority and expertise to challenge factual inaccuracies about breast cancer which appear in the press. This particular inaccuracy seems to have upset a number of women with bc and it would be good to see it corrected..with authority.
The Mail is the last paper I'd ever consider writing a letter to!
Actually I think it would be great if BCC could write to them and gently point out that their research could do with a little improvement and offer to provide assistance to their journalists for future articles on breast cancer... Journalists can sadly be very lazy and if you feed them information on a plate they tend to use it in my experience.
I'll make sure the press office see this thread Jane. Have you thought about writing a letter yourself? Or perhaps a number of you who have contributed to this thread could co-sign a letter. This might have more impact. Just an idea.
Many thanks Ann...and Emma
I wonder if BCC Press Office could ask the Daily Mail to publish a disclaimer about that 50% statistic.
I asked Emma Pennery, our Clinical Director about this. This is what she said:
It might be helpful to clarify a few facts about invasive lobular cancer. Because of the way the lobular breast cancer grows within the breast, it is correct that this can sometimes be harder to detect using current screening methods and because of this the cancer may have been present in the breast for a slightly longer time before it is found. This might mean that the cancer is larger in size or that it has spread beyond the breast.
The chances of surviving breast cancer are based on many, many characteristics of the cancer (for example the tumour size, how many lymph nodes are involved, the grade, whether it is oestrogen receptor positive or HER2 receptor positive and others). Having invasive lobular breast cancer does not in itself make the chances of survival any worse and it is incorrect to state this subtype has a 50% lower survival than invasive ductal cancer because in both the case of ductal or lobular cancer it would be dependent on the features listed above. As many of you have already correctly stated, invasive lobular breast cancer is not more aggressive than invasive ductal breast cancer.
As Jane RA mentions, if you have invasive lobular breast cancer, you are slightly more likely to develop breast cancer in both breasts. However there is no evidence at present to suggest that there are special or different features of lobular breast cancer that could be “targeted” to form new treatments. As I’ve mentioned above, lobular breast cancers may be oestrogen receptor positive and/or HER2 positive and in these cases treatment (such as Herceptin or tamoxifen) is thought to be just as successful for women with lobular cancer than for women with ductal breast cancer.
I can appreciate that some of the articles written about breast cancer in the press can be upsetting or frustrating to read, particularly if the information contained within them appears misleading. Our press team at Breast Cancer Care, together with the nursing team, try to work with newspapers wherever possible to make sure that information is both accurate and sensitively written. As you may have gathered, we were not involved with this particular article. While it’s good to read that it may have stimulated awareness of lobular breast cancer, it seems from your posts as if it has distressed or angered some of you. If you would like to discuss any of this further or have questions about lobular breast cancer you would be very welcome to ring our helpline on 0808 800 6000 or submit a question to our “Ask the Nurse” e mail service.'
I hope this clarifies things and helps the discussion.
This thread indicates how much hard factaul information women need about lobular breast cancer.
From what I have read lobular breast cancer is NOT in itself 'more aggressive' than ductal breast cancer. Lobular breast cancer affects the cells which line the breast lobules while ductal breast cancer is found in the cells which line the ducts. As far as I know the pathological make up of lobular cnacer is not intinsically different...both lobular and ductal could be er+ or er- for example, so I don't think that targetting treatment development at lobular breast cancer makes sense. Perhaps I'm wrong??
As I said earlier lobular breast cancer is harder to detect at primary diagnosis and that is probably why, if it is the case, that statistical survival appears poorer. Also if you have lobular cancer you are statistically more likely (slightly) to get a second primary in the 'other' breast.
Some comments on this from BCC specialists would be helpful?
I haven't read the article but it sounds as if it was written by an idiot!! Should at least state where the figures came from let alone get some advice on how not to annoy so many who are affected by BC.
But, for us lobular girls, it did raise some questions.
First of all, I was diagnosed with metastatic cancer, probable lobular so I am one of those that probably don't make the stats for lobular BC look so good. But who knows??
Anyway, I have been completely frustrated that so much of the information that you come across is more applicable to ductal BC -( I know this site tries to address the different types of BC). My spread of disease didn't fit, my presentation didn't fit (no lump), I used to think I was really special or weird!
So, why is the info on lobular BC harder to find?
Why is there so little research on lobular BC specifically, if indeed it has such bad stats associated with it. There are enough of us with this subtype that it should be researched independently and treatments developed specifically for secondary lobular BC. I work in research (not cancer) but I know how to find research articles and I know from reading these, that lobular BC needs to be explored further. It is quite different from ductal BC biologically and probably could be targetted differently.
So, Daily Mail man/woman, you may have done us a favour by at least mentioning Lobular BC and raising it's profile (still think you're an idiot!)
I'm a 'lobular' person and went nearly 10 years in remission before getting secondaries.
Haven't read the Daily Mail article and probably won't. Cancer Research have just done a photo-shoot showing me and my friend who both have secondaries (quite refreshing that they want a story from secondaries!) and we've been able to put across our story which is so different from the usual ones.
My dad likes the mail for the crossword and I know it likes to have 'crusades' about various things. If it is in the mail, it is generally hyped up rubbish or the 'pull your socks up' stuff about bc. No one tells some on with a broken leg to be'positive' or to 'just get on with it' if they have ms, parkinsons or any other disease. It is pink october as from tomorrow - oh dear. And as others have mentioned v ery little coverage if any about secondaries - probably wouldn't sell papers they think.
Becks ~ I agree that article was far more realistic as you said and Cathy I quite enjoy Tuesdays Mail but do take it with a pinch of salt. I am cross because of the inaccuracies regarding Lubular and the tralala of it all.
Personally, I think the health articles in the Daily Mail are tripe. I know I have had patients ask me about things published in there which say "dentists worldwide recommend blah blah" and we have never heard of what they are talking about. They never get any of their facts endorsed or confirmed by a medic and make things up as they go along. You can also bet they have heavily edited what these women actually did say to make it more sensational and therefore take it all out of context so they probably never even mentioned 50% survival rate as such. I know we should just ignore them, but as media, I feel they do have a responsibility to publish correct facts - after all, areas like advertising are heavily scrutinised for inaccuracies.
On the contrary the article in the 'You' magazine (page 55 and 56) was well written and a whole lot more realistic especilly the glass throwing.
They would be better off jst writing the pieces about people's experiences of BC and paying someone who know what they are talking about to fill in the BC facts at least then it would be accurate.
I think the 50% figure was not about aboslute survival about about the statistical difference between ductal and lobular breast cancer. If there is a difference then it is because lobular cnacer is in more cases likely to be diagnosed when it is more advannced...ie with lymoh node involvement. I am not sure that its true that lobular spreads more quickly...I think the problem is in detection.
Each of us has a different kind of survival statistic depending on many factors about our cancer. People liveand die with all kinds of different breast cancer.
Looked on here especially to see if anyone was as angry as me not just the 'get on with it' but the comments on lobular, I am in the process of emailing my bc nurse so I can get my facts straight. All the information states that ILC is uncommon NOT rare, as it is difficult to find it can be very big at diagnoses (so may have spread to nodes) I was lucky to be picked up at my first screening ~ I have NEVER heard of a 50% survival rate, where did she get that from? as for spread ILC is no worse than DLC ~ at least thats what I have been told and have read on reputable sites, yes there is a raised risk of a NEW cancer in the other breast. All very misleading and I have been thinking about it since I read the article on-line CROSS CROSS CROSS!.
I hate October.
I read it and wasn't at all impressed with the messages it was trying to put across. I really do think I am going to stop buying the wretched paper - the bit about 50% lower survival rate for loubular freaked me out too!
Jane you bring up a really good point there... why doesn't the media try to educate people a little more?
I'm glad to see a lot of focus on being breast aware, that's bound to help a few more people get an early diagnosis and lets not forget maybe help people be less paranoid. There's an article over on breastcancer.org about how many young teenage girls are paranoid about having breast cancer as they've been overwhelmed with media exposure. So obviously people are not being educated as much as is needed.
We've heard some strange comments (I'm sure like many other people here) from people and friends who just don't understand what chemo and other treatments do to you. Hardly anyone around me knew about the immune system crashes etc apart from those who've already done treatment themselves...
Why don't we ask the media to do some articles like 10 things you didn't know about chemotherapy. It might help some people be less scared of this stuff and understand when someone who looks like ***t says to you please keep your distance you really had better.
It might even encourage people to donate to help improve treatments as I've heard from too many people who are under the impression that the drugs basically make chemo easy now... yeah right 😉
I was insenced when I read this article yesterday and have logged on to start a thread about it......I don't usually take much notice of what they write but I love the 'You' magazine.
My understanding of Lobular is that it is harder to detect although if you are in a screening programme it should be noticed as the mammos are compared. It can be more difficult to get a complete response however the outcome is generally better than for other types.
I am a media volunteer for BCC and always insist on seeing the article before it goes to print so that I change any inaccuracies. At the start of each interview I make it quite clear that I find the words battle, fight and brave etc disrespectful and untrue so please can they not use them.
Love to all
I'm fascinated by the subtle changes which occur in the media portrayals of people with breast cancer. This story is the kind of story Daily Mail readers like: 'human interest', nothing too demanding, bit of girly stuff (this time women with rubber ducks decorated by Sharaon Osborne). 'Brave and inspirational' survivors have been done (to death) and this year Pink October is bringing a new kind f woman with bc..the no nonsense practical version who 'knuckles down' to having breast cancer...its just a new version to sell papers....adds nothing to understanding of cancer.
As to the statement: "breats cancer is not cruel" well its not. I get fed up (though I've probably done it myself) of human adjectives being attached to diseases. Cancer doesn't have a life of its own, it doesn't have motives, desires , prejuduices or plots. Cancer is just a disaese..a nasty one...but one which has acquired a particular place in 20/21st century folk history. I just long for the time when cancer can be spoken of as it should be...seriously, factually, for what it is, not as some kind of mysterious new agey designer must have fashionable routine plague.
I just skimmed this article..dead boring is all can say..I want my cancer stories more intersting.
Statistics on lobular cancer..I don't know..but I think lobular cnacer is no more aggressive in itself than ductal cnacer...the point is that lobular cancer is often diagnsoed later, therefore more likely to have spread to lymh nodes, and its that which makes for apparently worse diagnosis. (along with er pr her2 status which is down to the individual cancer) Its also unclear what the 50% refers to in any case.
I think the Daily Mail must be going for some kind of hack of the year record... it's the only possible reason surely, or maybe they're running an experiment to see what happens if 5 thousand BC patients flash mob them or something... now there's an idea, if only London weren't so far away and it's a nice sunny day too 😉
on this site gives quite a lot of information about lobular breast cancer. If you would like some more then pm me and I will get one of our nurses to make a longer post.
All the best
have to say that I'm glad i didn't read it - prefer to avoid statistics myself unless i'm prepared for it
... if i had read it I think it would have been a case of not knowing whether to laugh or cry as the only choice we have is to knuckle down and get on with it .... while looking well, being brave, avoiding buses and all that other garbage.....
think it's a bit like someone insulting the family - it's alright for us to say it but woe betide anybody else!
perhaps you could have a relaxing bath R to get over it - oh no - we can't have them can we - well knuckle down and do your best and go and lie in the bath with soft lighting, candles and a glass of wine and a packet of crisps!
don't know where that came from!
love FB xx
The Daily Mail never disappoints for poorly written articles about BC. I dont buy it anymore but daughters partner had it so i went and read it today, sorry i did as it never fails to increase my already high blood pressure.
Anyone else read the article entitled 'Breast cancer is not cruel- you just have to knuckle down and get on with it.'
What the 3 ladies write is good and some have had a re-ocurrence but once again no one with secondaries. Although a few do mention friends have died of this disease.
Can i ask BCC is this it true that lobular BC has a 50% lower survival rate than ductal as it has often spread before DX? If this is untrue maybe i could ask them to view double page spread and contact the mail. Its set me in a state of panic.
What do people think these articles are suppose to do???
Think i will tell my 2friends who were Dx with secondaries at initial Dx to just knucke down and get on with it. Actually they probably do.
Also one of our group who met in 2005 during surgery and are now great friends, who has just been Dx with bone mets and more tests for further spread to 'just get on with it.
Should i even go further and tell my friends hubby who has asbestosis related lung cancer and is terminal to knuckle down and get on with it.
Or my bessie mate just under gone surgery for BC and results and treatment plan in 2 wks, oh its just to be taken in your stride, dont be emotional and cry.
Sorry this is so long and rambling but these articles make my blood boil.