I’ve just been searching various well known sites to see if they had acknowledged today is Secondary Breast Cancer Day. So far, apart from here, I’ve been unable to find anything. I may have missed an article tucked under some heading but just looking under ‘health’ on the BBC, mumsnet, gransnet (both sites used almost exclusively by women, for women) and a few others…nothing.
Just curious has anyone had better luck than me? I’ve not looked for television or radio coverage.
There is a blog item by the Independant here
Anna
Thanks for the links you posted on the other thread Vicki.
Well done The Independent but apart from this the whole day has been even quieter than I thought it might be.
But thank you to those who submitted their accounts of life with S. B.C.
I just wonder if there will be anything in today’s papers … the day after. I was travelling home on Sunday afternoon and I didn’t have a chance to look at the Sunday Supplements to see if there was anything in them. Mind you they are usually wrapped in plastic with a load of other things.
This is the kind of thing that BCC should be trying to do. If the public doesn’t see our faces and know that we are individual people, and not just statistics how is the attitude going to change? Having Metastatic Breast Cancer is a bit like being a gay man with AIDS when that was first recognised - don’t see us, touch us, look at us and MBC might not exist and everyone can live 5 years happily ever after …
Just did a search for Metastatic Advanced and Secondary breast cancer … not a single mention on the Mail Online it would seem!
Results for ‘secondary breast cancer’
You searched for ‘secondary breast cancer’ - No results found on Mail Online
I posted a status about it on the public page of the Younger Breast Cancer Network Facebook group I run. Some of our status posts are picked up by Facebook likers and shared, and we can get it seen by over 25,000 people, but I’m afraid to say it didn’t happen with the secondary bc awareness day one I posted yesterday. But at least some of Facebook world will have seen it on their news feeds, having not heard much about secondary bc before.
Agree with Angelfalls…let’s hope next year is better.
Because of the lack of clear information about what was going on I simply got fed-up with checking the ‘secondary’ links which just went to the same old things. I’ve just follwed the link from the article that Melx posted about which was in the Express yesterday and actually found something new and useable, much to my surprise.
However because coverage of Metastatic Breast Cancer is largely confined to one out out 31 days it gives the impression that MBC is a quite rare occurance. 30% of those who are dx with primary breast cancer will have a progression to being Stage IV, another 5 - 10% are dx already at Stage IV. We are not a small minority of the BC Community we are a large minority. What people don’t understand, they fear. Because we are hidden away and not talked about as something that is an integral part of the BC experience those with primary BC live in fear of us. We are the baby being thrown out with the bath water because no one noticed that we are actually still here.
Vicki xxx
That is what we get for telling the truth and upsetting the Early Stagers? WE get banned for telling the truth? WE have to have everything moderated because we might upset the Early Stagers? What is the point of even pretending that BCC have any interest in Metastatic Breast Cancer? I am beginning to feel as though we are being used for BCC to gain kudos with the medical and political establishment by paying lip service to the idea that they are doing something to help us.
Sorry BCC if you feel that this is not fair, but I have asked in the past how many of those making the decisions about MBC actually have MBC. You don’t have to name names, or tell us what posts they hold etc, just whether there is anyone. Those of us with MBC actually ARE breast cancer because if you are not aware of MBC then you are not really aware of breast cancer.
Mammograms do not prevent BC, they detect it in some individuals, but it is not 100% accurate and is in itself carcinogenic. Having BC is not a way to get a free boob job and some time off work. Many people actually don’t know that BC still kills over 400,000 people on this planet each year. Over 11,000 of them are British. Think of the hoo-ha when handfuls of people got measles last year, and possibly one person died. Why is it so acceptable to die of breast cancer even though £M have been donated and spent to find a cure? Internationally only about 3% of the breast cancer research funding goes for work directly on MBC, 97% goes to Early Stage Breast Cancer. No one dies of ESBC, though they might die because of the treatments they receive.
I just feel as though trying to do anything to let the world know that we exist is falling on deaf ears because it can be justified that we will die anyway so no one needs to really do anything. Why am I so angry about this? Because no one listens, no one gives me any support … in short who cares? No one.
What completely baffles me Vicki is why are the true stats so difficult to find? Would there be less funding, less given as donations if the truth was available without having to search? I would have thought the opposite.
And I don’t know what to call all the pink stuff shenanigans but it’s not my definition of awareness, is it anybody’s? Over the years I have lost count of how many times I’ve read on other parts of these forums ‘oh I don’t look, I never look in the secondaries forums, too depressing, too frightening, too bleak, too scary.’ I think fear is completely understandable when you have just been diagnosed but I think all should be made aware of the true likelihood of the disease metastasing if only for it to be taken into account when someone is making decisions on treatment. If anyone wants to decline Tamoxifen, chemo, whatever, it’s entirely their choice.
But I think they should know the full story.
Dear all,
Following on from our previous reply about the health and breast cancer status of staff and trustees working at Breast Cancer Care I can reassure you that we have had and still do have a number of colleagues and trustees with secondary breast cancer working with us, and sadly a number of us have died from this disease too. Alongside this, our staff will also have many other health conditions as well as having mothers, sisters, and friends who may also have had or died from breast cancer. In a sense we represent the average workforce, but we are slightly different in that working here for many of us is a passion. Sometimes it is tough, in that over the years I have known too many women and men to die. Sometimes, its really rewarding as new services such as our Living with Secondary Breast Cancer meet-ups really take off. And sometimes, we don’t get it quite right, which is why we have the thread for you to feedback to us on.
I hope that this reassures you further.
Best wishes,
Diana
Thanks for the reply Diane and it is reassuring to know that there are some folks at BCC who truly understand the whole of the breast cancer journey. I went to two funerals on consecutive days during the summer to say goodbye to friends.
As for stats … well, there are lies, damned lies and statistics. It is incredibly hard to find stats that agree and which show some consistency. I actually had a load of them on a spread sheet which was fried when my old PC decided to give up on me. I actually had it open at the time and although I was able to get a lot of stuff back (including my niece’s wedding photos - phew) the things that were open at the time were gone and unfortunately I hadn’t backed them up recently. I have tried looking for some of the sources again, but don’t seem to be able to find some of those which I thought would be easy to find like those on the WHO site … maybe my brain fried along with the hard drive!
I suppose it boils down to what you want to use to back up your argument. As for the Mets area on a forum being depressing … how often do we get a chance to show the good stuff, and the positive ways that people have found to live with MBC? So much about MBC goes straight from diagnosis and early treatment decisions to deciding when to stop treatment and the end of life. When do we get to celebrate still being alive and able to do things? Just because we are not survivors in the usual sense of the word in connection with breast cancer, doesn’t mean that we don’t exist. After all ultimately no one gets out of here alive; being alive is the world’s worst sexually transmitted disease after all. But we all have to adapt to what we have. If I won £10m on the lottery I would have to adjust to that, just as I have had to adjust to living with MBC, and from the experiences of those who have made it big, it doesn’t mean that their journey would be happier or easier than mine. It would just be different.
For me, just finding out there was no set way to deal with cancer and that it was perfectly normal to be angry (and I do know I still haven’t got over that …) scared and lost; because this isn’t a film where the heroine bravely comes to terms with her illness with a stiff upper lip perfectly lip-glossed and unwaivering. But I would love to know how many others were left with the impression by their oncologist that there was no hope and no one was even going to begin to try and preserve your life, just oversee the end of it; that they ‘might’ think of doing something when symptoms came along, and that chemo was ‘not appropriate at this time’ - whatever that means. To me it meant go into a corner and die quietly because no one is interested and you are now a waste of time and NHS resources. That is why I wanted to know if there is anyone at BCC who could understand that. If there was anyone who has been told that their cancer can’t be cured.