13 October 2013 is Secondary Breast Cancer Awareness Day. Part of Breast Cancer Awareness Month, the Day is dedicated to publicising the issues affecting people living with secondary breast cancer.
We’d appreciate your feedback on some of our ideas so we’ve created a short survey. There are only a few questions so it shouldn’t take too long, and you can skip any questions you’d prefer not to answer.
It’d be great to hear what you think. The survey is here:
It’ll be open until 17 June. If you have any questions or would prefer a paper copy of the survey, please get in touch - my email is jill.ratcliffe@breastcancercare.org.uk
Thanks for your help,
Jill, Marketing Team
PS: We want to make a splash with the campaign in October, so please don’t share the ideas any more widely for now. We’ll update you on our plans over the next few months, so please keep an eye out for details of how you can get involved.
I’ve just completed the survey and can’t believe that of all the really important issues facing those of us with secondaries, BCC have decided to go with body confidence issues… This is an issue affecting everyone with a dx of BC and is not specific to secondary BC. Meanwhile, 12,000 of us are still dying every year! I think we need a reality check here! We’re only given 1 day out of a whole month to try and raise awareness of our situation as it is. This seems to me to be a wasted opportunity!! I really hope that BCC will have a rethink on this…
“secondary breast cancer which can’t be cured, only controlled.”
I just found this on the BCC website and find it quite misleading in that it is a half-truth; secondary BC can be controlled in some people, with varying degrees of success and for varying periods of time. However, as things currently stand, it will ultimately cause the death of the person affected. Secondary BC Awareness Day should be about the facts in their entirety, so that the reality of our situation is absolutely clear to all. Please don’t “pink wash” here! And don’t shy away from the whole truth!
Am in total agreement with Angelfalls here. I havent had surgery as its not offered to most of us secondary ladies. Ok my hair fell out but that is regrowing and not an issue.
My main issues have been: fatigue and returning to work; anxiety and living with bone mets; living with uncertainty; knowing we can only have treatments not cures (yet); being youngish 42 and ending up with bone mets n bc diagnosed at same time. Body confidence really isnt an issue, I do think there should be a total rethink which can highlight secondaries while somehow explaining the many issues we have.
I had a look at the survey, and could hardly believe what it was about.
I thought, really? They want to concentrate on THAT??!!
Then I thought, well I don’t have secondaries so maybe I don’t know what the major issues are. But my feeling is that non-cancer people really do not know of the numbers of people who are living AND DYING with this frightful illness. So many people I have met assume BC is just a speed bump in your life these days. It is treatable. Hell, most people think it is CURABLE and once you’ve finished active treatment you should put it behind you and move on.
In many ways I think I have done myself a disservice by subscribing to this website, because to be honest, reading about all you ladies battling secondaries, and then every now and again, when one of us (if you’ll allow me to say that) succumbs … well it frightens the Bejasus out of me!!
I don’t know how I will cope if/when it happens to me! (And I do feel like it will, I’m sorry)
Edit: and regarding body confidence. The main way I feel about my body is that I have lost confidence in it altogether. It does sneaky destructive things of which I am totally unaware. I no longer trust it at all.
It certainly makes you rethink everything. I am waiting for scans next week to see if I am responding to my maintenance drugs. I had a good rrsponse to ec chemo. I think our main issue is treatment not cure. More research is needed for us…
I agree with other comments made on here - body confidence is not the issue for me. It was an issue with primary diagnosis (mastectomy, recon etc) but I’m over that and now dealing with secondaries. I feel raising awareness is the biggest issue - it is an ‘unknown’ for many people and the issues I find are the fatigue, mental ups and downs, supporting family and friends. Many areas to be addressed but for me body confidence is not that important and to have only one day and not a week for secondary breast cancer…
Hi Angelfalls, thank you very much for completing the survey, we really appreciate your views. We’re keen to hear from as many people as possible so the campaign reflects the key issues that people with secondary breast cancer face. We’re proposing this theme for a couple of reasons.
Secondary breast cancer hasn’t traditionally had a high awareness by the public and media – we’ve found it difficult over the years to get this topic covered, although we’ve had some very encouraging success over the last few years with Secondary Breast Cancer Awareness Day.
We have heard from many people with secondary breast cancer that body confidence is an issue for them, while acknowledging that it isn’t so for everyone, or that body confidence often means different things for different people.
By focusing on body confidence this year, our intention is to engage the media and the general public, capture their attention and then be able to explore wider issues around living with secondary breast cancer. By using body confidence as a theme, we want to explain what it means to live with secondary breast cancer, including having a reduced life expectancy and dying of breast cancer.
Over the four years we’ve been running the campaign, people with secondary breast cancer have said we should raise awareness around the theme of ‘living with secondary breast cancer’. While the issue of a shorter life expectancy and dying of breast cancer is a key part of that, people with secondary breast cancer have asked us to raise awareness of the day-to-day experience of living with this diagnosis.
While the Awareness Day is 13 October, the campaign itself runs over several months and to maximise the reach of the campaign over this period it’s useful to have a central theme that will engage people.
The campaign also directs people to our ongoing Spotlight campaign to influence healthcare policy and practice, and improve standards of care.
It’s really helpful to have your views as we are very keen to reflect the voice of people with secondary breast cancer.
I hope this explains our thinking a bit more. Thanks again for your valuable feedback. As well as this survey, if you’d like to help shape our work, please do sign up to Breast Cancer Voices. Find out more at www.breastcancercare.org.uk/voices
Best wishes
Jill, Marketing Team
Thanks for your response, Jill. After reading your explanation, the choice of issue really doesn’t make any more sense to me, I’m afraid.
I find it interesting that many people with secondaries have raised the issue of body confidence, yet if you look at the posts on the secondary boards, relatively few of them relate to this.
As I said previously, this is an issue which does not relate specifically or uniquely to secondary dx, so it does not give any sense of how a secondary dx is different to a primary one. And clearly they are very different scenarios.
If BCC is looking for more media coverage for secondary BC, I would have thought that a focus on what makes our situation different, isolating and dramatic would help grab headlines and column inches more effectively than “more of the same”. But clearly, I’m no expert! I would be interested to know why BCC thinks that body confidence will grab the media’s attention more than any other issue.
I would also say that, for many of us, our reduced life expectancy and premature death are very much a day-to-day part of living with secondary BC. Just read the boards! And as such, these sobering facts should not be “airbrushed” out of our reality - we deserve far more and far better than this.
I actually gave up on being a BC Voice, as so many of the meetings were held in London and those opportunities which did happen to be closer to me were generally when I was at work, when I was still able to work.
And one final question: what is the Spotlight campaign? Despite having been involved with BCC for a number of years, I don’t recall having heard of it before. But that might just be my chemo brain…
Angelfalls
I totally agree with you. I am someone newly diagnosed and the last thing I had on mind was my body image. It seems that once we are no longer a possible positive statistic we are brushed away both publicly and medically.
I am aware that my mets and prognosis are difficult for some. Most of my friends like myself were brainwashed into the pink campaign That is be a good girl (regular mammo’s etc) and things will be fine.
I think it is important to get out that there through no fault of our own we are faced with a difficult and distressing time however strong we are.
If one more person says to me it’s ok treatment has improved I shall scream , I accept treatment is better, but it is not a cure.
it’s time to be honest.
Mara
I’m not really clear about why BCC have chose this to focus on either. I guess it may depend on what people mean by body confidence though. For example maybe it could mean something like not having the confidence that you’ll be able to do something you used to do or would like to do without your body letting you down, or wondering what part of your body the cancer is going to affect next?
I agree. Very strange choice. Who is this aimed at? Those of us with secondaries, or wider awareness of what living with secondary breast cancer entails? Not to say I haven’t had issues along the way but, really, body confidence comes very low down on the list, faced with one’s own mortality. Feel quite annoyed about this, in fact! Shows a deep lack of understanding about the issues we face.
Alison
I’m hopping mad about this (as my survey response probably shows). I agree with what has been said above. I think the ‘body confidence’ theme trivialises the grim day-to-day reality of living with, and facing early death because of, secondary breast cancer. Please rethink your approach.
I’ve just completed the survey. How often does lack of body confidence feature in any of the Secondaries forums? I would say it’s hardly ever talked about. I’m really surprised and so disappointed body confidence is to be the main focus for a Secondary Awareness Day. To me it’s a complete trivialisation of what life is really REALLY like living with secondaries. 12,ooo of us are still dying every year! Living with secondaries effects your mind as much as your body. It changes everything, we watch our family, partner, children, our parents living with our diagnosis too. I am so grateful to have lived for ten years with stage 4 but this is Pink Washing, max cycle, full spin.
Yesterday I read through the survey questions and couldn’t bring myself to answer them - the last thing I expected was questions about body confidence. A focus on the body confidence theme is wrong!
Today I didn’t answer the questions, just put down my comments. Body confidence issues apply to BOTH primary and secondary diagnoses - the focus should be on the DIFFERENCE between primary BC and secondary.
I agree with Angelfalls that a focus on what makes a secondary diagnosis different is what’s needed. It was hard enough to get my close family to understand it. MaraUK makes a good point about those with secondary BC no longer being a possible positive statistic, and Angelfalls says that the prospect of premature death due to secondary BC should not be “airbrushed” out of the reality.
So let’s capture the attention of the media and the general public, not with the side issues, but by highlighting really important ones. You don’t always have to use the ‘positively pink’ approach.
Totally agree with Angelfalls here. It was an issue on primary dx, but as I developed secondaries before I had an mx and have not had surgery, I really would not care now about recons etc if I could just be cured.
Let’s keep bumping this up. It would be great if all us secondaries lot could give their point of view. Feeling more and more distanced from BCC, which is such a shame. Also feeling more and more marginalised. Who on earth thought that this topic would be beneficial?
