BCC insists on using the term ‘secondary’ breast cancer as though we come in second place to PRIMARY breast cancer. A survey in the UK showed the 77% of those who responded had no idea that Metastatic, or Advanced, Breast Cancer cannot be cured medicalnewstoday.com/releases/262209.php
So what is BCC and other breast cancer charities in the UK doing about making us the focus of research and support? I really am not sure. MBC information is tucked away on the website and if you click on the Secondary Spotlight link you seem to go through to a separate site. There are evidently about 30,500 people living with MBC in the UK so why are we covered in a cloak of Pink? Why does MBC only get one day during BC Awareness Month? And to add insult to injury they chose the 13th of the month which is associated with bad luck (and I can say this having been born on the 13th of a month).
So BCC how about campaigning for 4.4.2014 to be a Stage IV, Metastatic Breast Cancer day, just as the Triple Negative groups in the US are establishing the 3rd of the 3rd as TNBC day.
Since we are lost in Pinktober, how about our own day right away from the whole Breast Cancer = Survivor thing?
Good ideas! -though I’m not sure if people in UK understand “Stage 4” - they would probably understand “advanced” and “incurable” - but do we want to be tagged by either of these labels?
I like the idea of a day outside Pink October (I would say “I’ll second that”, LOL!) A quick google tells me that on 4 April, Martin Luther King was assassinated… and it’s the International Day for Landmine Awareness and Assistance… otherwise I’ve not spotted any major clashes.
(And my mother died on 4 April, of cancer, but not breast cancer.)
I definitely agree that Metastatic breast cancer doesn’t get the focus it deserves, either from the main cancer charities or the press. There are a lot of knowIedgeable, well-informed people on this site and I wonder whether there is an opportunity to form a separate group who could pool resources and campaign for more awareness and focus on MBC, and tackle some of the really important issues like access to drugs etc etc. Any thoughts?
There is already a website, bcpals , with publicly viewable information pages written by women with bc, about many aspects of bc including metastatic and high-risk genes. (The forum is private.)
Most of us want advice, especially when first diagnosed.
Some of us are aware that our treatment options are now becoming fewer, despite much research, because of the wrong priorities of those in the UK who hold the NHS purse-strings. We need a public group (possibly a new charity) to lobby Parliament etc.etc.
All of us need support at times - and we are keen to offer support to others undergoing treatment and everything else that is part of our ongoing cancer journey.
All of us with mets have a shorter life expectancy than we would have had otherwise… in our wiser moments we want to live life well, while it remains.
If the Facebook group(s) succeed in making more people in the UK aware of metastatic bc, this will help.
I prefer to say I have metastatic breast cancer. I’m not comfortable with the term ‘secondary’ and even if people don’t know the meaning of ‘metastatic’ at least they might ask or look it up and learn something. The ignorance surrounding metastatic BC is shocking and the whole pink=survivor thing really doesn’t help us. There is far too much emphasis on ‘fighting’ and ‘beating’ cancer and not enough on what it’s like to live with it.
Just the other day a nurse at my GP practice (who knows me well and has been dressing my rads burns for many weeks) said to me how nice it must be that my treatment was over now and the cancer was gone :smileyfrustrated: I have a work colleague who asks me every time I see her if I am in remission yet! I could go on and on. I feel that the majority of people have no concept of cancer that is not curable and that for us there is never an end to it (well apart from the obvious). BCC should educate and try to fairly represent people with all types of breast cancer.
I don’t use twitter or facebook but I hope BCC have noticed we have suddenly lost a huge number of mets ladies who used to post here. I was part of a group which broke away and used the site less in 2005. We were all stage 4 and sadly there’s only 4 others left now. But something is amiss here as people do set up groups. Sorry I’m straying away from the original post Vicki but would it help if we had a private forum here? Hi Lucinda is the site being set up on Facebook or Twitter?
I can’t really put my finger on why it’s not working here but the new look boxes layout isn’t helping, in my opinion.
I feel a little removed from everyone…anyone else? Vicki shall I shut up and start a new thread on this? :smileyhappy:
Dear Sandra
Please do call our helpliners for more support if you feel able, lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000
Take care
Lucy BCC
Sorry to read your news but I hope you will find some comfort from many of the positive stories on the various threads in the secondary section. It’s horribly frightening when you are first diagnosed with mets but the ladies on this forum are very supportive. Xx
I am from Birmingham… and until 3 weeks ago I was about to start RADS when I showed my oncologist a big lump that had appeared halfway through chemo… she told me it was a blood blister… so trusting the professional like you do… I was referred by locum surgeon for urgent CT biopsy… and it seems 1 lymph node got through…apparantl!!y it is now “controllable” because she also told me I had liver mets… which I havent… so going from good to bad to worse news in 3 days didnt do much for me…informed my kids Im on a timescale…and not to tell me etc…due to see her 14th Oct…I am now having a new chemo… gem carbo… the huge lump has dissapeared …good or bad im not sure
Just felt lost these following weeks…tried to boost myself reading inspirational stories cos Im sure as hell not ready to go anywere yet
see this link for Breast Cancer support groups in your area, but please check first if they are prepared to support someone with Metastatic Breast Cancer. Some groups really are only for Early Stage BC and are not MBC friendly. birminghamcancer.nhs.uk/patients/support-groups%20%20/breast-support
There is a Haven near you in Hereford (formerly the Breast Cancer Haven) which does have a MBC Support group and the next meeting is on 11 Oct, or the second Friday of the month, call reception on 01432 361061 if you would like to attend and there is also a booking form you can download, though that may be more for one off events. They don’t charge for support group meetings, but they seem to charge £5 - £7 for other things like Tai Chi and Meditation.
The Penny Brohn Cancer Care centre is just outside Bristol pennybrohncancercare.org/ and they do day and residential courses which are now free of charge. Check them out if you think an Integrated Holistic approach would be of help to you. Penny Brohn did die of Breast Cancer (they deal with all forms of cancer), but she did so 20 years after being told to go home and get her things in order. pennybrohncancercare.org/who-was-penny-brohn