I am concerned that metastatic disease may be going undiagnosed leading to a delay in appropriate treatment.
I would wish to see added to your campaign a move towards mandatory observance of NICE guidelines on metastatic disease throughout the country to minimise delayed diagnoses in metastatic disease patients.
Dear BCC team
Contratulations on being awarded the 'Best Exhibition Stand', that must have helped to draw attention to our cause, and thank you for your work to raise awareness of secondary/metastatic breast cancer.
Good luck next week.
Just wanted to update you about our Secondary Breast Cancer campaign at the Party Conferences this year. We've been at the Labour Conference for the past few days with an interactive exhibition stand featuring stories from 5 women living with secondary breast cancer. We were also joined by two of our wonderful volunteers, who were able to speak directly to MPs about what needs to change for people living with secondary breast cancer.
Today we were delighted to be awarded 'Best Exhibition Stand' at the conference, and we've had such a great reaction from MPs and conference delegates. We're really excited to continue these conversations and continue to push secondary breast cancer higher up the political agenda. As well as this, last night, our volunteers Frances and Emma were invited to meet with Jeremy Corbyn to discuss secondary breast cancer.
We'll be continuing to campaign on secondary breast cancer - next week we'll be at the Conservative Conference in Manchester so watch this space for more updates.
Thanks for all of your support with our campaigning!
Policy and Campaigns team
Just an update on what is happening. Starting this Sunday our Campaign team are visiting the party political conferences, launching our Our bucket list campaign for secondary breast cancer.
Over the next few weeks the policy and campaigns team will be going to the political party conferences to talk to MPs about secondary breast cancer. You can get involved with our campaign here - http://bit.ly/1NQI1p2 and keep an eye on our social media pages to see what we’re up to. We’ll be at the Labour conference from this Sunday and the Conservative conference the week after.
You can also fill in your details on our online form to send an email to your MP asking them to visit our secondary breast cancer exhibition stand at the conferences - http://e-activist.com/ea-action/action?ea.client.id=1937&ea.campaign.id=41395
Watch this space for more news and updates.
Digital Community Officer
Thank you for your comments. We agree that there needs to be research into new treatments for secondary breast cancer. However, as some of you will be aware, Breast Cancer Care is not an organisation that funds research for new treatments. Instead, our aim is to improve the care and support that people living with breast cancer receive. We hear so often, including from the Forum, of the problems people are facing, including not having access to specialist nursing, palliative care, or drugs and treatments that are already available.
Secondary Breast Cancer Awareness Day is an opportunity to shine a spotlight on these issues and this year we will be launching a new campaign to really hammer home the need for government to make secondary breast cancer more of a priority. One of our five policy asks is that everyone has access to the treatments they need. We will be taking our campaign to the political party conferences and then on to Parliament on Secondary Breast Cancer Awareness Day. Following that, we will continue to work with MPs and Ministers to make sure they understand what secondary breast cancer is, what the issues are for people living with the disease, and the solutions to improve care.
There are going to be lots of opportunities to get involved and so I hope you will use these to raise the things that you think are important, including more research into treatments.
In the meantime, please keep posting your thoughts here as we really value your feedback and contributions and use them to help inform our policy and influencing work.
Policy and Campaigns team
wow! you are so right! I really do not understand why more money and research is not going into a cure. More hard hitting marketing of SBC is the only way charties will stop spending money on 'awareness' and start lookin g at the real issues : CURES!
Thanks all for all your thanks.
I really feel Marketing/PR for metastatic breast cancer ought to be hard-hitting and focus on CURES and awareness. We all face our own 24-hour struggle (lying awake in the small hours magnifying our issues included) mostly without help. Any advice in these areas will make little real difference to our lives.
We want positives for longevity, not fluff too petty to mention in our situations. Frankly I don't care what other people's issues may or may not be in relation to my 'incurable' disease. I want some hope of survival. Most of all I really want to be cured. That positive would blow every single negative out of the water. And we'd all be singing in this rain.
See link below:
This conference is on 16th-17th October in Boston. Points on their list are:
Future therapies and research
Network and share with others living with mbc
Great questions Pleasant, can I add another please, sbc (METASTATIC BREAST CANCER) awareness please, I had never even heard of it until my dx last year I had no idea or information about it!
Why is the UK so far behind in its treatments? Just benchmark against the USA for example. And two tiny examples of things not done here - please let me know if you have had either - are the subtyping of triple negative cancer and readily available PARP inhibitors.
Why so few trials for TN secondary? And why so many exclusion criteria? It is almost impossible to be included unless you are early stage?
I would love to hear about some available trials for advanced TN, non BRCA stage 4 trials. One will do where we would not be excluded.
It would be great if we could have all your suggestionss for possible live chat topics by midday Wednesday 26 August 2015. This will give us time to consider all the suggestions and plan what to do and when, We will then share it with you all and plan on letting as many people who have metastatic breast cancer know about the planned topics and when they are taking place.
Please do continue to share your suggestions of the type of topics you would like to be included in the live chat sessions as well as the days and times which would work best for you.
Digital Community Officer
Having read a variety of posts over the last few months, what has shocked me is the varied treatment women receive for very similar diagnosies. It would greatly help if all SBC women could have access to a second opinion, if they feel one would be beneficial. This would greatly help with the severe anxiety faced by many SBC patients and also highlight any major problems with disparity of care and access to new treatment.
Good questions Pleasant. I don't think we are near to finding a cure for metastases. But there does seem more available to help some of us live longer but so much more research is needed, particularly for trip neg BC.
The secondary awareness day seems to have flown round again and we have lost many who were campaigning so energetically last year, it makes it all seem so sad, nothing really changes. Elsewhere on the forums others are so unaware of secondaries it's frightening to read.
Will bow out here though and read more constructive posts than mine. Feeling very forumed out at the moment and taking a back seat. X
nice one pleasant1 I agree. May I add new SBC drugs that are potentially exciting the medical community
how close are we to finding cures?
what is being done to find cures?
how likely is it that a cure will ever be found?
what can we do to progress finding cures?
how can we improve our chances of survival?
This year we are deliberately widening the coverage of secondary breast cancer awareness beyond just Secondary Breast Cancer Awareness day on October 13th. The clinical and digital teams would like to host Live Chat sessions at different times each day throughout that working week (daytime and evening) to enable more people to access this service. As suggested by Live Chat users previously, we thought it would be a good idea to theme each of these. Although we put our heads together and came up with some ideas of themes and topics including some that are a little ‘lighter’, your ideas are the ones that count and we would really like your thoughts and input as forum members!
Please feel free to agree or disagree with our suggestions (!) and also tell us what topics you think would be useful. Also, what time of the day or evening would work best for you? We will do our best to accommodate as many requests as is possible. We will obviously be hosting 5 sessions that week, but any other topics could be carried over into weekly Live Chat if you wish.
Secondary Breast Cancer CNS
Side effects (general or specific)
What not to say/little things that mean a lot……………
Managing other people’s emotions
Intimacy and relationships
Hi Everyone, we thought you may like to have a preview of some of our plans this year.
The policy and campaigns team are busy planning our activity for Secondary Breast Cancer Awareness Day on Tuesday 13th October.
This year we’ll be going to the political party conferences with an exhibition stand focusing on secondary breast cancer. This will give us the opportunity to speak directly with MPs and ministers about secondary breast cancer and how they can help with our campaign. The stand will be staffed by the policy and campaigns team, as well as volunteers who are living with secondary breast cancer. We’ll also be encouraging MPs to donate if they would like a secondary breast cancer pin badge.
We’ll use the political conferences to build momentum as we move towards Secondary Breast Cancer Awareness Day, when we’ll be doing more in Parliament to raise awareness of secondary breast cancer.
We want to make as much of an impact as possible when we announce our plans so if you want to be kept up to date with our campaign please join our campaigns network – we’ll be sending out further information about how to get involved with our secondary breast cancer campaign in September.
Policy & Campaigns Team