Survey - Secondary Breast Cancer Awareness Day 2013

I just completed this survey and ticked NO to everything. It won’t help any of us in the situation we are in. We are fighting for our lives, literally FIGHTING so excuse us if we don’t care about our ‘body confidence’
I went to a support day at my local hospital with guest speakers and some helpful hints from BC nurses and then I get a stupid survey letter from them in the post asking me if I felt more Body confident now and If I felt it helped me on an emotional level. Needless to say that went in the bin.
I was planning to have a reconstruction a month before my secondary diagnosis. Now I don’t want one and just want to LIVE… even if I have to carry this heavy prothesis around forever.

this has just about made my blood boil. All those issues Lemongrove has posted too are far more important. I would like a focus on ‘‘Coping with A Secondary Diagnosis and Help Controlling Side Effects’’ Or ‘‘Getting the best advice possible on treating Secondary Breast Cancer and where to go for it.’’.

Not ‘‘Body Confidence’’ as I am NOT going dancing, shopping, skating or bowling or anywhere in public where my body shape might be an issue while I am curled on my bed in pain and vomiting whilst taking Morphine and a million other pills and worrying whether I am going to see Christmas.

I have a dream.
I have a dream that the powers-that-B(CC):
* will LISTEN to us.
* will READ the forums on which we post.
* rather than using donated money for focus groups that appear to be a meaningless exercise (I have attended one myself but not recently), instead, do some videoconferencing with those who run metastatic breast cancer charities in the US and maybe elsewhere.

I must admit, I’m increasingly using the American sites, as they seem to be “post-pink” (I am SO over the pink, fluffy cr*p!), and just seem to “get it” more. Shame, really, as I’m fairly anti -American in general! (No offence meant to any American readers! Lol!!) :wink:

Secondary Cancer for me is about
Shock, anger, jealousy
Managing chemotherapy side eflooking looking and feeling ghastly
Not knowing when I will be very ill, and in pain
Not knowing how and when I will die
Grieving the loss of future
Grieving not having grandchildren
Grieving loss of retirement with my husband
Not seeing my sons get married
Not seeing my children get older
Causing greif and pain for my children ,husband and family


Esha Ness… you have said so clearly what secondary breast cancer means to you…
If I could decide what should go into a booklet or on the Secondaries section of the BCC website, your words would be up front for all to read! (Or if you prefer, anonymously).
A cyber hug for you… it won’t cure cancer, we know, but we are here to support one another.

I have just read through all your comments and completed the survey and like all you ladies think 'what the *££&*. I find Breas Cancer Awareness week difficult to get my head around at the best of times, I know folk mean well but all the Pink Fluffy bunny ears etc. make me cringe - pink never was a favourite of mine.
I appreciate that oe Public may not wantto read about sad and difficult topics like young mum’s dying even young grannies but that is the reality and Lemon Grove has summed up the major issues brilliantly and these should be issues that you BCC campaigns on.
Oddly I think in many respects I look better in the glossy magazine sense than I have for a good while - i have lost weight due to treatment, picked up a tan, not working so many days due to fatigue so look more relaxed. so does this mean I am OK?
Great Stuff Ladles keep shouting out.


Some of you may already know me, I’m Diana, the Director of Services, and as such oversee the forums as well as our other services here at Breast Cancer Care.

I’ve been reading your posts over the last few days and would like to reassure you that we are very much listening to your feedback, and will continue to do so. Your thoughts and opinions are of great value and over the next few days we will be collating yours and others’ thoughts about the campaign. It is very important to us to ensure that we have listened to all perspectives in order to help us shape both the services we provide and the campaigns that we run – both to improve care and treatment and to raise awareness of the issues of living with secondary breast cancer.

I must also apologise as it’s obvious that we weren’t clear enough in the survey about the intentions of this campaign. Breast Cancer Care does of course understand that appearance isn’t the prime concern of people with secondary breast cancer. Our main priority regarding secondary breast cancer is and has always been to improve standards of care for people with secondaries – which encompasses many of the issues you’ve raised in your posts. This is the Spotlight campaign Sophie refers to in her post above. But every year we also run a parallel awareness campaign for SBCAD which aims to increase both visibility and understanding of secondary breast cancer and to direct people to that wider area of our political campaigning. Unfortunately this gets harder every year as the media constantly look for a new angle – it shouldn’t be like that, but it is. This year we therefore decided to take the approach of highlighting people with breast cancer’s feelings and experiences about their bodies – which include things like fatigue, lymphoedema, the effects of surgery and treatment and certainly not just outward scars or appearance – to ensure we can get media attention for and raise awareness of all the issues around secondary breast cancer.

We have done research with people with secondaries, and in fact a woman with secondaries is taking part in the visual side of the awareness campaign, but we do appreciate that most of that research was carried out within a context which we haven’t properly conveyed in this online survey. We certainly didn’t intend to give the impression that we believe people’s appearance is their main concern when living with breast cancer.

Having said all that, we definitely want to take on board all the various issues you’ve mentioned in the posts that you want us to campaign for, as they will be of huge help us in our ongoing Spotlight campaign to improve standards of care for people with secondaries. We’re really keen to hear about these kinds of specific problems that people with secondaries experience. So to help us get this part of our campaigning right, please do continue to post your experiences here.

We will always continue to campaign for better care and support for people living with secondary breast cancer alongside the activities of Secondary Breast Cancer Awareness Day itself, and we will continue to ask for your and other users’ feedback to inform all aspects of our work. So please do continue to complete the survey, thank you to those of you who have responded so far, and we will continue to keep you updated as we go forward.

Diana Jupp
Director of Services

Thanks for your response, Diana.

However, an important question remains: if people living with secondary breast cancer don’t understand what you’re trying to achieve by lumping all these important issues under the inappropriate and misleading term of “body confidence”, how on earth do you think you’ll get the media and wider public to understand?!!

Diana, I don’t want to be rude but let’s cut to the chase. The body image tag is lame, and if BCC use it as the main theme of Secondary BC Awareness Day, they will be missing a prime opportunity to raise the hard hitting issues that really matter to those of us with secondary BC. If BCC’s PR department cannot generate media interest other than by watering down secondary BC they should be sacked.
By all means include body image in the spotlight campaign, but do not make it a central theme of Secondary Breat Cancer Awreness Day.
If BCC cannot attract media interest, why not ask those of us with secondary BC for ideas of how to attract media attention?. Alternatively I know of a journalist in a national newspaper who would be interested in a proper campaign (just Email me for her contact details).

Diana… thanks for your response to our comments and trying to get it right !
Yes I agree that the media are always looking for a new angle in order to engage the public. However I do feel that BCC are diverting away from the the harsh awful reality of what Secondry Breast Cancer is actually about for us.
If the public could be better informed about Secondary Breast Cancer and the harsh awful reality and truth of it surely you are then raising peoples awareness and knowledge.
My body issues… are certainly not my primary concern anymore. They were when I had primary breast cancer.
I really hope that you have enough time to think again about the focus on Secondary Breast Cancer.

I think it’s vital to distinguish between primary & secondary bc. My worry is a focus on body confidence muddies the waters. So, even if Jill, Sophie and Diana at BCC are right about that theme gaining media attention, it’s unlikely to get a clear, helpful message across.

I’d like to see campaigning to get data collected on secondaries.

I have been thinking about this thread for a good few days now and tried to think of a different way of looking at it all. When I think of body confidence yes I immediately think of scars and bald heads and loss of my female identity so mostly the primary bc issues but over the last few days I thought of it differently:
I have no confidence in my body anymore, its slowly killing me and failing on me so how can i? I have no boobs and won’t ever be able to have some as my back is too damadged from the cancer to take the weight and I don’t have enough time to spare to have the operation, so when I’m out in the world I don’t feel confident and its not just because i’m boobless but because BC has taken away my choice, my confidence.
I can’t eat naughty food anymore, the food I love so much like chips and burgers and pizza and chocolate because I’m not confident enough in my body to not wake me up in the middle of the night being sick because my liver is under too much strain from the drugs to be able to digest it as well… don’t get me started on the fact I can’t really drink either… all my vices taken away because i’m not confident my body can handle them
I’m not confident in my clothes because i’m slowly putting weight on because I’m more and more housebound so yes it’s a visual looks thing but even with an incurable cancer I still want to wear my nice clothes, I still want to look good, I still want to look like me but I don’t because of my cancer.
Which leads me to exercise, I cant run anymore because i’m not confident enough in my body to not break a bone half way round the park or leave me in bed for days in pain because of the impact… same for cycling, I used to love these and they were a great relief for me. I can swim, pilates and yoga but only gently and with an acceptance that i will have to take more pain killers afterwards, not really enough to build up my confidence in myself again.
I’m not confident that my body will stay in its current stable state, that it won’t throw more tumours at me. I"m not confident in my body enough that my MRI tomorrow won’t show more bone damage that will see me in an operating theatre again and away from the bits of my life that I am clinging onto like work and friends.
So yes, body confidence for me is an issue and its a completely different issue than when I had primary and maybe this campaign could give us a chance to outline all those differences and the many more I have? I’m not denying there arent many issues around our disease that need to be hightlighted and many of you have spoken very passionately and I would love to see them tackled but I just wanted to give my thoughts around ‘body confidence’

Diana, Like Lemongrove I apologise for being blunt but i would also like to see BCC do effective campagining for more support and resources. That would give me much more hope than any focus on body issues.
I followed the link to the Spotlight campaign.

  • The BCC report on campaigning is now over 18 months old (October 2011).
  • There is no information on what BCC has done with the results of the pilot to collect data that reported over a year ago.
    Do you intend to update this information? How are you doing against your campaign objectives? Is the campaign a success - or is it not? If not, why not?
    I would have thought the media would be very interested to know what the obstacles to improving support and care for SBC are.

Hear, hear!

If it’s harder (why is it?) to keep the attention of the media when it comes to secondary breast cancer issues I would have thought the more hard hitting, gritty issues would be the most important ones to raise rather than body confidence that granted is mentioned often throughout the primary forums but hardly ever comes to the fore here, on the secondaries forums. Pink October only has the one designated day for secondaries let’s not be too accomodating.

Sorry if this sounds harsh, but it seems to me that it’s not just the media that aren’t really interested in what secondary BC patients have to say… An agenda has already been set and we WILL fit in with it…

I think there have been some really good points made here. I am newly diagnosed to bc and sec…double whammy. The pink campaign unfortunately washed over me :frowning: Yes I heard about it, saw all the merchandise, even did a 10 mile walk. Did I check my breasts? Notice a lump? Relate my painful hip to bc? No. My friend was getting really excited about decorating her bra for the moonwalk, I had to remind her to get the message out to check breasts…
I am worried and scared about my future, worried about pain, worried about progression and spreading to other areas of the body, I am sad I cant have a family, may miss out on seeing my niece and nephews grow up, worried about leaving my husband, worried about the inability to work and finances, worried about fatigue and my body letting me down, I worry about the heartache and pain I see in my parents faces…living with sbc is hard and my future is uncertain. I suffer anxiety.
A year ago I knew nothing about bc or bone mets…within a year its changed me. I am still me but mentally and physically I have changed. My body has been subjected to the harshest treatments and all totally out of my control.
Body confidence? I wish I had confidence that it will behave and do what the oncs tell it sadly I have little control :frowning:
Thats how I feel…please dont sugar coat sbc. We need data, research, more treatments and a cure would be nice. Screening earlier, have met many 30/40 year olds with sbc.
Everything in my life was turned upside down a year ago :frowning:

Perhaps we need to start a campaign ourselves!

Was just looking at campaigns and came across this. Aimed at PBC…just saying!