Secondary Breast Cancer Awareness Day 2012: shine a spotlight on secondary breast cancer

Hi Chascat/Moondog.
joined also…

I’m liking, sharing, retweeting everything. Can’t beleive we dont have more. Very interested to see what will appear in the media for us.

It looks like we are struggling, here, at least, but yes, I’m looking forward to hearing at least a little rumble.
I’ve signed up, but am not very techy, so it may not work!

Have spent hours trying to get info on metastatic breast cancer, looking to find out how many people have it and how much money is dedicated to research and treatment. I want to keep posting & tweating news on secondaries so we’re not forgotten in the sea of pink but I can’t find anything to say. All I can find that only 2% of total research expenditure is used specifically to research mets. And approx 30% of breast cancer sufferers have mets, Don’t know if that’s accurate and can only find old data of a small target group. Seen that BCC (am starting to see how hard they do work for us) pressurised the dept of health and there is now a Strategy for Cancer as it was recognised that they had absolutely no idea how many of us have a secondary diagnosis. Could tweet about myself but I’m too dull, not left the house today Anybody got any ideas?

Seen dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_123394.pdf
ncin.org.uk/publications/default.aspx and there’s a cancer atlas, but it’s all old data.
Just want to do something useful while I’m stuck at home.

Can’t do thunderclap but will Twobby non stop at the relevant time.

BCC please can you publicise this all over your site & twitter, it is still a bit invisible particularly in the sea of pink merchandise my twitter timeline is currently full of. It is a damn sight more important than where to buy the new pink pandora charm from, but I’ve seen that at least 100 times today alone! I know it isn’t bcc doing the pink product tweets, but there is a risk the message will get lost if it isn’t constantly reinforced. thanks

Bumping for more Thunderclap participants…x

Hi southpool,

Thanks for your message. We will definitely be putting this all over our social media channels in the coming days in the lead up to Secondary Breast Cancer Awareness Day. With so much planned for the month of October, we did not want to start the messaging too soon before the day to make sure people didn’t forget by the time the Twobby and Thunderclap came around on the 12th and 13th but now are annual fashion show has passed (this was held last night), we will begin to promote our campaigns more prominently.

We’ll also be promoting the ‘Day in the Life’ series and our Secondary Breast Cancer Awareness Day event in Glasgow on the 11th October. I won’t go into the details about the Twobby and Thunderclap as Leah has done that in a previous post but if you have any questions, just drop an email to the moderator email address (moderator@breastcancercare.org.uk).

Best wishes,
Mike

Thanks Mike when I start seeing stuff I will retweet frequently. Am so fed up of bc awareness month seeming to be about pink merchandise rather than the real issues. I am glad you are doing a campaign to raise awareness of secondary bc & we all primary & secondary need to make sure it doesn’t get lost in the sea of pink.

Thanks for your reply & looking forward to seeing the campaign.
S x

Mike said “annual fashion show has passed (this was held last night), we will begin to promote our campaigns more prominently”
I have secondary breast cancer for life, not just for 13th October, and I have had secondary breast cancer throughout October including on the day of the fashion show. Am I the only person who is unhappy with BCC’s priorities for this month, I wonder?

Mrs Blue you’re not & I don’t have secondaries. To there credit bcc are the only charity who are campaigning on secondaries this month & in my view it should be their only priority. Leave the pink & fluffy stuff to the other charities & devote the month to campaigning on something that really matters & is long neglected.

Sorry if this feels like a rant but it is something I feel really strongly about.
S x

Have signed up… now a little over 80 people… shocked so little response so far. Come on all you 1ary NEDdies we must get along side our 2ary sisters.

Thanks, RevCat and others… including you BCC folks who have indeed ackowledged the reality of secondary BC.
I’m not interested in social networking myself, so, what else is BCC doing for us this year, other than the webpages and “A Day in the Life”? As has been said before, there should be something about secondaries on the BCC home page. How about pink and black for 13th October? Or… surprise us!

I have secondaries, and I can see that BCC do alot for us. Problem is that we were such a hidden unknown quantity that they’re playing catch up. It’s not that I don’t appreciate everything they do, more that we’re so overwhelmed by the pink publicity that the little that is done for us is lost.

I’ve been keeping an eye out for news stories so I can tweet etc but there has only been one in the last week.

I want to do alot more. Have changed my fb picture to a ribbon but it’s not official. Tried the BCC pinbadge but felt it lacked impact. We really need to use this month to shout about who we are, we’re living ordinary lives and for us, there is no end to treatment. If the stat I found is correct, secondaries account for 30% of breast cancer sufferers, we don’t appear to have 30% of the media & pr spend of bcc let alone the other charities and other companies cashing in.

Would love to be wrong though???

Here, here. I totally agree. It’s all about “a cure”, and “think pink” and, you know, ring, ring–there are an awful lot of us who are looking for help for today.

Bumping up latest posts. As rev cat says we should all be joining in on this.

Have BCC any plans for getting a slot on a breakfast/morning show about secondary bc at all?

I appreciate it is not a cheery, happy scenario for the pink, fluffy success stories wanting to raise awareness and get women (and men) to check themselves early but even a couple of minutes explaining what secondary bc is would perhaps raise prominence. Unless you have come into contact with anybody with mets, you won’t have a clue what secondary cancer means be it breast cancer or other forms. I’ve found I’ve had to say to people asking if I’m now ok that no I’m not, I have terminal cancer. Sounds harsh but sometimes it’s the only way. They take a step backwards as I don’t look ill and are under the misapprehension that someone with terminal cancer should look sick etc all the time which as we all know isn’t necessarily the case.

When you look at the numbers (and I know there is no accurate data about exact numbers because it has been ‘ignored’) of people affected by bc mets - say 30% as has been quoted - this makes something like 15000 people a year who are diagnosed with and living and dying from the cancer spreading. Frightening.

Liz

Thanks to everyone for trying to bump up support for the twobby and thunderclap.

As you’ve found Na7asha , trying to get robust statistics about the number of people diagnosed with secondary breast cancer is very difficult, not least because until recently most cancer registries simply weren’t recording them. Following Breast Cancer Care’s campaign on data collection, cancer registeries in England should now be recording those statistics, although it will take some time before that actually leads to reliable statistics. We are continuing to campaign in Scotland and Wales for collection of data on secondary breast cancer. It is estimated that there are approximately 36,000 people living with secondary breast cancer in the UK.

We are hoping to see more coverage over the next couple of weeks, although it is difficult to predict. We’ve worked intensively with journalists to explain about secondary breast cancer and that has led to a significant increase in coverage over the past couple of years, which we hope will continue this year. We have worked to integrate messages about secondary breast cancer into our other Breast Cancer Awareness Month activities, so there were models with secondaries in the fashion show as well as video features about their lives. Those videos will feature elsewhere as well, such as in the QVC broadcast on 17 October.

In this week’s Woman’s Weekly there is a double-page piece on secondary breast cancer, featuring Pauline Polley who was diagnosed 6 years ago. It also mentions Secondary Breast Cancer Awareness Day and the Spotlight campaign. I’ll try to keep you updated with any other coverage that we manage to secure - obviously it’s not certain until it’s actually printed!

In terms of breakfast tv, lizcat , we’ve had some coverage on This Morning and STV but so far nothing specifically about secondaries. We’ll keep trying, of course. This story about Lesley, a radiographer who has been diagnosed with secondary breast cancer, has been covered widely in the Scottish press.

We are hoping for more coverage as Secondary Breast Cancer Awareness Day approaches, and I’ll try to keep you posted on that. In the meantime, if you spot anything, post it here on this thread.

Searching on “secondary breast cancer awareness uk” / this week, I do see lots of BCC-related links :slight_smile:
… and this one:
blogs.independent.co.uk/2012/10/02/secondary-breast-cancer-i-live-with-a-black-hole-for-the-future-so-the-present-is-all-i-can-enjoy/

thanks for posting xx

Mrs Blue, that’s the only story I’ve found this month. Feels a little liek we’re banging our heads against a brick wall. and I guess BCC can’t force people to publish a story. Is all a bit depressing. There must be famous people with mets? Maybe if you see a story on Primary Cancer you should respond to it. Hmmm, maybe we need a strategy.