THE BLOG
27/11/2013 08:47 GMT | Updated 26/01/2014 05:59 GMT

Why Do We Need 'Breast Awareness'?

I'm writing this post in response to an article written by 'breast expert' Elisabeth Dale which brought up a few issues around the topic of 'breast awarness' and why campaigns, such as CoppaFeel!, even exist. I was not asked to comment on the #BraHjack campaign when Elisabeth wrote the article, so I thought I'd clear up some of the points raised.

Disclaimer: This isn't me talking on behalf of CoppaFeel!, this is me talking on behalf of me and what I, as CEO of breast cancer awareness charity and a breast cancer patient, have learnt over the past 4 years.

BSE vs Breast Awareness

Firstly, and most importantly, Elisabeth is American, and the blog is from the US. Therefore, I would hasten to ensure we all know the difference between what the US advocate when it comes to breast awareness, and what we advocate here in the UK. Breast Self-Examination (BSE), as talked about by Elisabeth, is a strict, regimented monthly 'lift your arm, stand in front of the mirror' etc boob check that we don't advocate, and in fact was phased out a few years ago by Department of Health in the UK. We promote 'breast awareness' here, which is about knowing yourself, your boobs, and having the confidence to seek medical referral if you notice something that isn't right for you. You can check yourself as often as you like, so long as you know what's right or not and feel empowered to see a doctor.

And that is exactly what we at CoppaFeel! promote, specifically to young people, and will continue to promote with the #BraHijack. The US has started phasing out BSE too, after realising it actually causes more anxiety than it is worth, and does in fact put people off checking at all. I of course only know all this because I need to know this (and in fact something I learnt at Breast Cancer Care's Train the Trainer course, where the charity trains people in health promotion how to talk about breast health). You'll be forgiven for thinking that BSE is still the best thing to do, because after a quick google search, you'll see how much of a profile it still has online. But most of the sites will be from the US. Being a 'breast expert' and not explaining the above in an article aimed at women is a little irresponsible.

So on that matter too, it's important to point out that CoppaFeel! only operates in the UK, and is registered only to the UK. We have no intention of introducing CoppaFeel in the US any time soon, mainly because it already has some brilliant awareness campaigns in existence, and why do what others are already doing so well? It is, however, exciting to think that the #BraHijack will reach out internationally as the new bras with the boob checking reminder labels will be shipped all around the world, creating yet more awareness for what we do, but more importantly questions being asked as to what the label represents and how it can affect the new bra owner! We are running a campaign for the UK, specific to the issues in this country.

We know, because we speak to young people on a daily basis, that the main reason they are not breast aware is because they think there is a regimented way of checking yourself (BSE). Secondly, they are scared to, and can you blame them? All we read and hear about is negative stories. Let's let it be known how many people LIVE with this disease in the world. Our message is simple - there's no right or wrong way to check yourself, just get to know what your boobs look and feel like normally. If you are diagnosed, at whatever age, you have potentially played a role in finding it at a stage it can be treated successfully and you can go on to lead a happy and healthy life.

We don't go around telling young people they can get breast cancer at a young age, people often think that is our main message because of what happened to me. But that's not why I started the charity. It was because me, my friends and no young person we'd speak to had a healthy relationship with their boobs! And rely heavily on getting mammograms when they hit the golden age of 47 (or 50, depending on where you are in the country).

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The value of spreading breast awareness

So what exactly are the issues in this country. Well, if you saw the news the other day you'll know that we are seriously lagging behind on the cancer survival front, and a lot of that is linked to late presentation and delayed referrals.

This is a link to papers written about the need for an early detection initiative (aka NAEDI - National Awareness and Early Diagnosis Initiative)

Other factors enhancing the need for our work....

If breast cancer is detected at stage 1, a woman's chances or surviving beyond 5 years in 9/10, this drops to 1/10 if found at stage 4.

5% of the 50,000 cases of breast cancer each year are diagnosed at stage 4.

Despite women in their 50s/60s being most at risk, almost 10,000 women, who are under the screening age of 47/50 (depending on where you are in the country) are diagnosed annually. It is in fact the most commonly diagnosed cancer for the under 39s.

...most breast cancers are found through self-checking

...only half of women are confident they would notice a change in their breasts*

...three quarters of people who noticed a change in their breasts did not go and see a doctor - worrying about wasting their doctors time, embarrassment and difficulty scheduling appointments are the top three reasons*

...over a third think there is not much of a risk they will get breast cancer now or in the future. Lack of knowledge of what to look for when checking is the main barrier to self checking.*

...CoppaFeel! brand awareness has doubled since 2011 and logo recognition has increased year on year, while all other breast cancer charities brand recognition has decreased. CoppaFeel! remains a good reminder for people to check their breasts.*

...young women aware of CoppaFeel! seem to have heightened awareness of symptoms*

...a third of young women say they have never checked their breasts for signs and symptoms of breast cancer. Activities that are more common include getting eyes checked.*

...nearly 1 in 10 are initially motivated to check their breasts because of a charity*

...while other charities brand recognition is very similar between the general population and university students; our brand recognition is much greater on university campuses (35%) compared to general population (12%) highlighting the success of our targeted approach on campus*

...Those aware of CoppaFeel! are more likely to check their breasts (83%) and check more frequently**

...Around 1 in 3 women aware of CoppaFeel! check their breasts regularly because of CoppaFeel! (s45)**

*Based on a sample of 1383 18-30 year old women from the general public and a sample of 376 students from the universities we have targetted. Carried out by Vision Critical, July 2013.

** Based on research carried out in 2012 on same sample size

We are an education charity aimed at young people, run by young people. Everything we do is measurable and we work very closely with human behaviour experts, GPs, oncologists as well as the main breast cancer charities such as Breast Cancer Care and Breakthrough Breast Cancer who very much advocate what we do, mainly because their approach and audience would never allow them to do what we do.

We have already seen how our message has impacted women who acted on their symptoms who were subsequently diagnosed early (and before you say it, these weren't DCIS cases, these were cases with lymph node involvement), and every week I receive emails from people thanking us for making them more aware of their own boobs, and how proactive and empowered they feel, not fearing that the disease will one day jump up and bite them in the ass, but that they can play a role in their own fate.

There's not much more evidence we can gather from our work than that because the people we have targetted over the past 4 years, aren't at the high risk age yet. When they are, we will have played a role in ensuring they are proactive with their symptoms and have empowered consultations with their GPs who will be much more likely to refer someone who has said 'I know my boobs well because I have been checking them for 30 years, therefore I know this lump / crusting / itch / pain / whatever isn't right for me' than someone who doesn't know how long their symptoms have been there and will subsequently be sent away to keep checking it for another few weeks - weeks that could make a huge difference in their survival!

Soon we will be introducing (to our new website!) the protocol GPs should be following when you visit them with any breast issues. We want people to know what to expect from their GP visit and how to get the most out of it. It can be a daunting experience, but one they will feel more confident about when they know the procedure. We also want GPs to know we are doing this so that they are aware how informed their patients will be when they come to see them. It helps everyone involved get the most out of the GP consultation.

Anyway, I digress....Here is an interesting study about equipping older women with breast cancer knowledge and how it has impacted their outcomes

Ultimately, we are stepping in with an early intervention, before young people even develop the fear of getting breast cancer and are learning other important, life saving lessons, such as crossing the street safely. Why wait to learn about how to protect yourself from cancer, and how to find it early - a disease that affects 1 in 3 of us in our lifetime - until you are old?

Interventions such as #BraHijack could have a huge impact not only in our behaviours towards our boobs, but the way we view the disease as a whole. It's not just something that crops up as a pink product on your supermarket shelf once a year, it's not the disease that killed one of your family members, it's a disease we can be proactive about.

And we're not saying that one size fits all. Not everyone who checks their boobs and is later diagnosed with breast cancer will survive, or that the cancer won't reoccur at a later date. No matter what, this disease is unpredictable. Fran advocated boob checking until the day she died. She had triple negative breast cancer, the hardest to treat and chances are she would have died aged 33 if she'd been boob aware or not. But she believed in the power of knowledge and being proactive.

Sexy slogans and sexualising breast cancer

The only people that don't understand why we are called CoppaFeel! are typically not in our target demographic. In fact, most older people - and I'm talking 60 plus - ask me why we named the charity 'Copperfield'? My answer usually involves me having to touch my boobs. "Oh, oh, yes dear!' soon follows.

I was sitting in a tiny restaurant the other day with a friend. The table next two us was really close to ours and was occupied by two ladies, I'd say in their late 50s. I was wearing a CoppaFeel! jumper as I'd given a talk earlier in the day to student housing providers about how they could promote boob checking and ball checking in student accommodation. I had forgotten to take it off and as I sat chatting to my friend I could sense the ladies looking at my top. We were that close I even heard one of them saying 'It says CoppaFeel! on her jumper, that's disgraceful'. It actually made me smile a bit. Mainly because I am clearly not the kind of girl that would wear a top asking a bloke to touch me up, which is what they were insinuating.

Which is precisely how we feel about our charity as a whole. We obviously don't ask men to randomly grope young women, nor condone any behaviour of that kind. But we do use young language to enforce our message and make it relevant. Nothing we do is sexualising this disease, nothing we do has ever disrespected people going through this disease** otherwise why do we have our Boobettes? - young women who've all been there, done that, got the t-shirt! In fact, in a lot of cases we just talk about getting to know your boobs, without even mentioning breast cancer.

This isn't aimed at breast cancer patients or survivors, this is aimed at young people who have never even considered touching or looking at their boobs and starting a healthy relationship with them. Our approach is irreverent and fun spirited for a reason. The young mind is busy, fickle and often not that interested in health messages, but what we have created is a message so relevant to them and on their level. I have lost count of the amount of times someone has told me that being told to check their boobs by their old school nurse had no impact on them whatsoever. And it certainly didn't on me, otherwise I may not be visiting my hospital every month! And we hear it from the old nurses side too, often they say 'there's no point in me saying this stuff to them, they just won't listen'. And so we do it, because we need to.

**I am so tired of people speaking on behalf of everyone that's ever had breast cancer, especially if they have not had it themselves. It's like we have been given membership to a club we didn't want to be part of. And suddenly someone is our spokesperson who feels they can voice their opinions about how 'we' feel and how 'we' react to stuff. Bore off. We have our own minds, thanks.

"Awareness"

How do we go about ensuring breast cancers are detected early? Awareness. But not just 'breast cancer happens, you should be aware' awareness. Actual interventions such as CoppaFeel!.

Yes we are all 'aware' of breast cancer, if you are not, then you must be living under a rock. But that is not what this is about. Bra labels are a world first, an actual behaviour change intervention, not just another flash in the pan "awareness" stunt. Awareness is a fluffy word, of which I am not a huge fan of anymore since it is now being used in the wrong context. So many charities and campaigns keep popping up that claim to raise 'awareness' that is not monitored but because they are speaking about a certain illness, it is creating a real change. I don't necessarily believe that, which is why we are putting things in place, putting things like bra labels to the test, that we can start measuring, as well as doing market research every year to check we are having a positive impact. Tell me, why on earth would we keep doing this if it was a waste of time?

"Stop shoving your pink stuff down my throat and focus on actually doing something useful if it matters that much to you. Become a cancer researcher, someone who fits bras on women post-mastectomy, or volunteer for an organization which brings meals/gives rides/offers other forms of support for cancer patients. 'Awareness' is no longer helpful." - a comment left on Elisabeth's article.

Comments like that don't offend me, they worry me. We class any breast cancer charity as a pink "fight against breast cancer". Which isn't too surprising since it dominates the shops in October. When I was in California in October I saw just how much pink corporate partnerships were being used. A lot of the time the company would just proclaim it was "for breast cancer". What about breast cancer? to research treatments? for early detection? to give support? They obviously didn't feel the need to elaborate, just like the general public doesn't ask them to.

People's general thought is: 'it's for breast cancer, so it must be good' NO! ask them, ask us, HOW it's good. I want the public to investigate what it is we do, what it is any of the breast cancer charities do, and how we are making a difference, because that's how we can ensure they know how THEY can make a difference. In fact I think we should be asking more questions, you should want to know where your money is going. It is not OK to fling a pound at someone on the street, to receive a pink ribbon, that makes you feel like you have done something in the "fight against breast cancer". Ask HOW it is they are getting there. And then think about your own boobs, your own health, and how you can pro-actively do something to reduce your risk and/or catch it early. My view is that the public sees the breast cancer world as something so static and constant, something that happens to Mums and Grandmas, something here to stay. It is not ok. We can all do something about it.

And it's not just our ambivalence to where the money goes, it's the race to find the "cure" that worries me too. I once gave a talk where the host introduced me and CoppaFeel! as a charity supporting people with breast cancer and "researching the cure". My heart obviously sank. There won't be a cure in my lifetime, not your lifetime, probably not even your children's lifetime. Because there is no one size fits all "cure", as such, for this disease. Events like 'Run for the cure' in the States are misleading and just fueling a vicious circle of ignorance. We all want an easy fix, but it just isn't realistic.

So it worries me when new campaigns and charities crop up claiming to raise awareness. Which makes me think it is far too easy to start a charity in this country. The Charity Commission should work harder at ensuring new charities don't already exist, or are aiming for something that someone already is. Collaboration is awesome! Just think how much more powerful two passionate minds are, instead of one. If a charity similar to CoppaFeel had been in existence before we started, I would have asked them how I can help, to see why it was I didn't hear about them/see their work before I was told I had advanced breast cancer. Ultimately, CoppaFeel! shouldn't have to exist. No charities should have to exist. We want to get to the point where we are no longer needed.

Please, do me a favour, start educating yourself about the charities you support!

(And just as an FYI, we are not asking the lingerie brands for money. In fact, Curvy Kate, who Elisabeth mentions in her article as one of the lingerie's on board with the campaign, is not spending any money on the labels.)

"There is absolutely nothing about this campaign which will help any person, unless it is to help someone feel better about herself instead of doing something to really benefit those with breast cancer. - comment left on Elisabeth's article.

It's easy to tarnish charities like CoppaFeel! with the 'something awful happened to the founder, therefore she had to start a charity' brush. I'm bored of hearing that. Yes, I started CoppaFeel! out of personal frustration, but I, the co-founder, and the trustees, didn't make the decision lightly or without thorough research first. And when I say research, I don't just mean statistics such as how many cases of BC are found at stage 4/diagnosed at A&E. We talked to people, from every background, people that matter and know their stuff. If I really wanted to do something that would help ME get through this, I'd have fundraised to give a heap of money to one researcher who could find me that magical treatment to save my ass (or gone on lots of holidays). CoppaFeel! is now made up of 5 full time, hard working staff and many many supportive people, companies, agencies in the periphery; not just me and my little personal crusade against breast cancer.

My oncologist has his own research lab so I hear constantly of the great advancements made in treating metastatic breast cancer, albeit that not as much money is being ploughed into that as primary breast cancer. Sure, it won't advance quick enough to save me, but whilst I am here, I know how my time is best spent, and that is educating young people about how they can live a long and happy life - with or without boobs if that time comes. (FYI I have one boob, and I couldn't give two shits about that fact, because I am still alive.)

Right then, I have work to be getting on with.