Thank you for thoughts and feedback. Reading through I wondered whether it would be helpful for me to explain some of the history of Secondary Breast Cancer Awareness Day and BCAM (as I understand it) and the term “secondary breast cancer” before discussing some of the ideas you have mentioned.
Firstly, the word “secondary” breast cancer:
A number of years ago, before setting up the Awareness Day, Breast Cancer Care undertook some very early research into the terminology that people most felt comfortable with and understood. There are many names used in the world of breast cancer – Metastatic breast cancer; secondary breast cancer; Stage IV breast cancer. Health Care Professionals interchange between them all and everybody has different perspectives on the terms.
At the time, our research showed that for a majority of people “metastatic” breast cancer was a term that was complex and not as easily understood; Secondary breast cancer was preferred. Therefore we chose to name our services, campaigns and the awareness day as Secondary Breast Cancer.
However, this is now a number of years ago, and perhaps it is time to do some more work on the preferred name, and the name that most people will understand correctly and easily.
Secondly, a bit of back ground on BCAM:
Like Secondary Breast Cancer Awareness Day, Breast Cancer Awareness Month (BCAM), was initiated in America, and Breast Cancer Care was one of the first charities to bring over BCAM to the UK (in the early 90s).
When I first started to work here, about 17 years ago, BCAM was about all breast cancers - there was little distinction between primary breast cancer and secondary breast cancer at the time. At the beginning it was more of a movement of women calling for attention and demanding change: too many women were being diagnosed late and, because treatments were less targeted and less developed, were dying too young and too soon.
The BCAM that arrived in the UK was therefore all about raising awareness and funds to improve early detection and treatments. It was also already pink (this was the colour chosen by Estee Lauder).
Over the years, BCAM has changed immensely, partly through the work of charities like ours and all the others that now support it, but also because it captured the attention of many supporters – both high profile and ordinary.
Every year now, up and down the country, people choose to raise money and awareness for breast cancer. At the same time, breast cancer treatments and support has progressed greatly (partly as a result of the changes women have called for) and as a result BCAM became less focussed on the numbers of people dying but on the numbers of people living with breast cancer and surviving.
So, why Secondary Breast Cancer Awareness Day and why October 13th?
Although clearly there is a positive story about breast cancer in general that needs to be celebrated, the consequence is that the message that breast cancer still kills, and that the UK continues to have lower survival rates than many of its counterparts in Europe tends to get lost within the pinkness of BCAM.
About five or six years ago, a number of our forum users began to raise their voices and concerns about the lack of their presence in the month of BCAM. They were a force to be reckoned with, and were absolutely correct. As a charity we struggled to get coverage about the tougher end of breast cancer.
As a result, we decided to join with the American model of a specific awareness day (called International Metastatic Breast Cancer Awareness Day) which was already allocated as being 13th October. We liaised with them and our Voices user group and set about establishing the day here.
2013 was our fourth year of having a Secondary Breast Cancer Awareness Day in the UK, and to be honest was our most difficult one to manage and get right. And we are not really sure we did get it right, which is why we are on here to discuss and listen to your thoughts and ideas for how to improve it.
Would we change the date?
Andy, our Fundraising and Marketing Director, and I are very interested in exploring changing the date. Potentially bringing it out of BCAM altogether and possibly creating an awareness week as an alternative.
There are lots of ideas floating around that we could do so much with if we had a different emphasis and more time to play with in order to capture the public and media’s attention, as well as to properly achieve change in policy and service provision. We could also then get the other charities to join us in campaigning and raising awareness more as well, because currently the other charities have not included the day in their calendar of activity.
However, an alternative concern might then occur, and be questioned by others now or in the future. If we did this, would we risk BCAM completely ignoring the issue of Secondary Breast Cancer altogether?
Would a separate week/day end up silencing secondary breast cancer in BCAM?
What should the focus be on?
Should the day/week be on raising awareness to the general public that breast cancer can and does spread? What would be the outcome/impact of this do you think? Would it help if secondary breast cancer was better understood by you’re the general public, making it less of a taboo perhaps?
Should the day/week be about campaigning for better care and access to treatments? Should we have a distinct call to action (like we do in our Spotlight Campaign that asks for specialist CNS’s to either be fully focused on Secondary Breast Cancer or to be trained in this area as well)?
Please do continue to share your thoughts with us here.
Thanks for the advice about getting help but ... my main problem with getting support is that I am not dying quickly enough. I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system. They lied. When I called I was told I would have to referred all over again and there was not guarentee that I would see the same therapist. I saw the counsellor at the local Hospice for a while, but again I didn't die quickly enough so they discharged me. When you are in no-mans-land of being stable no one is interested in supporting you. My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal. If I drop in I feel as though I am intruding, or no one is in. That said my niece is supposed to come an help me clear some stuff out of the house next week, but I'll wait to see if she actually turns up. It is usually the case that if there is some paint to watch dry somewhere that comes first.
Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer ... being a survivor, having a recurrence and end of life/death, and most folks know all about the first 'Pink' stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a 'cure'; aka treatment for Early Stage Breast Cancer.
At the moment I am off work with depression and stress from having had to work the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend's life such a misery when she worked there that she left ... or in a converted cupboard. What is even worse is that the people moving in to the office I was in don't even work for the organisation!
Do I feel as though I can express any of this ... no. Why? Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist. After all be don't want to stress them out, do we? They are the important ones. They have Primary BC and they are Survivors.
Focus on major newspapers, magazines, TV (not just social media).
Real quotes from those of us with mets. Real photos/videos. Not just what BCC think should happen - I'm detecting a does-she-take-sugar attitude among BCC staff, which is getting worse not better.
Lots of statistics.
A fair allocation of funding for metastatic/;advanced bc.
And yes, probably get rid of the unhelpful word "secondary".
Thank you for your thoughts and suggestions. Interestingly the suggestion about changing the date for the metastatic breast cancer day has been mentioned by quite a few people, definately food for thought.
Your post is sad reading and I can hear and understand the frustration you seem to be feeling. You are right, only you know what it feels like to be you diagnosed with incurable breast cancer. However hard anyone else tries to understand or empathise it is never going to be the same as experiencing it first hand. Many oncology units have access to counselling services and I wonder if yours does. If so, perhaps you may feel that asking for a referral might help. This isnt always the right option for everyone, but many find it does help. Also some find that talking to the Samaritans helps them in particular moments of emotional need, they are there for anyone who wishes to talk. Our own helpline 0808 800 6000 offers support as well as information and are there for anyone affected by breast cancer.
The term secondary breast cancer is a widely used term to describe cancer that has spread to other parts of the body and is interchangeable with the terms metastatic, stage IV or advanced. It in no way implies that the individual with the cancer is placed in a secondary position. As with every individual person each has there own preference term they prefer to use, please be respectful of an individuals choice as I would ask them to be respectful of yours.
Thank you for your continued engagement in helping Breast Cancer Care planning SBCAD 2014.
The stories are moving around. Mine is Victoria Ford from Lymington, Hampshire with a photo of me holding my little great niece.
If you want an example of a story about MBC that should be getting out into the press in this country http://www.nytimes.com/projects/your-breast-cancer-stories/?story=1136
Where is this kind of coverage in the UK? I know that this is partially out of the control of BCC but at least these stories are real and not just the kind of air brushed Pink stories that normally seem to appear. From what I read of other stories there is no divide here between MBC and Early Stage - they are all just personal experiences of living with breast cancer.
15-10-2013 10:10 PM
It all seemed to be really hastily put together with no real opportunity for those of us with MBC to actually take part. As I have said before 'Secondary' makes us sound less important and personally I find it a bit insulting, but that is just my view. Call it what it is ... MetastaticBreast Cancer. Until it is properly differentiated and everyone is made aware of what MBC is then we will continue to sink without trace. If people are not aware of MBC then they really aren't aware of what breast cancer really is.
As we actually make up 30% plus of the BC Community why do we get one day. Why can't we have a separate day and a separate month when eveyone is not obsessed with Pink and Survivorship? I have suggested before that the 4.4.2014 would be an ideal day for Stage IV, Metastatic Breast Cancer.
We need to have Metastatic Breast Care Nurses trained and in all hospitals where cancer is treated. I found out yesterday that the hospital where I am treated now has FOUR BCNs and still nothing for Metastatic. Why isn't one of them trained to deal with MBC? Isn't it bad enough to know that no one is even going to try to help you survive? Or as my first oncologist put it that they might think of doing something when I got symptoms; aka go in the corner and die quietly!
The mental aspect of dealing with MBC can be extremely tough and there is virtually no help. Everything about Stage IV cancer seems to go from being diagnosed and making treatment choices to end of life. For some of us there are years of living in limbo feeling that we are not accepted to the world of Pink Survivorship and that we mustn't mention it ot anyone in case we upset them? How bizarre is that? With the likes of Jennifer Saunders (to get publicity for her new book, surprise, surprise) accusing us of wearing cancer like a Badge, what are we supposed to do? It always seems to be don't upset the Early Stagers because they live with such terrible stress and no one wants to tell the truth of what Breast Cancer is really about.
I really seriously doubt that anything will change. I have just lost faith in any of this and right now nothing seems to have much point. I think I would rather be dead, it would make life a lot easier for everyone else. But in many ways this is the crux of the matter. Where is our support? When are we allowed to be proud of still being alive? When are we going to stop being an inconvenient truth?
Having closely followed and read all the comments about Secondary Breast Cancer Awareness Day 2013, we now want to ask you to share with us here what you would like to see happening in 2014.
Some people have talked about changing the date. Others talk about issues they feel are important which should be highlighted. Whatever your views and ideas, we would like to hear them and ask you to help us shape Secondary Breast Cancer Awareness Day 2014.
Diana Jupp, Director of Services, and Andy Harris, Director of Fundraising and Marketing, will be responding to many individual comments while the thread is open throughout October. We will be using your comments, questions and suggestions to inform any further awareness and service development. Please post your comments, suggestions and questions on this closed thread so that we can be sure we capture them all. This is a very real opportunity for blue sky thinking.
With best wishes,
Your Forum Team