Breast Cancer Now Forum

I completely take on board your comments about threads,  Zeppa , and will add this to our feedback.   Thanks again for your thoughts on this trial, all. We're listening and will continue to do so. ... View more

Hi  Danigirl501,   I'm sorry to hear you've been having problems with private messages.   It looks like you have two user accounts, and that the newer one should contain the private messages dated post-2012. Do let us know if you need any assistance with accessing this account, or if we can help in any other way with this.   Thanks!    Helen  ... View more

Hello all,   Thanks very much for letting us know your thoughts on the 'Latest threads' box we're currently trialling.   I understand that, for some, it's not quite what you'd had in mind. However, I'm really pleased that we're able to test this and gather feedback.    As you may know, we spent time before the forum re-launch investigating ways to present latest activity in a way that doesn't immediately feel overwhelming (or perhaps upsetting) to users. We of course want to balance that with ensuring a great experience for our more established members.    We'll continue to work on this, and keep you updated.   Thanks again,   Helen    ... View more

Hello there,    We're trialling a new way of displaying latest posts within threads on the forum homepage. If you access the community on a PC or laptop you should now be able to see 'view the latest threads here' box above the categories.    As ever, we'd be really interested to hear your thoughts on this. Do head over to forum feedback and let us know!   Many thanks,   Helen  ... View more

Hi  ria2056,    I do hope all goes well for you today.   It's good to hear that the  June monthly thread posts are helping.  If you have any questions or need to talk, our Helpline team is also here for you (0808 800 6000), as well as our email service - Ask the Nurse.    With warm wishes,   Helen ... View more

Hello all,   We’ve been reading this thread with interest and wanted to update you on the public consultation re: Kadcyla, in particular. I’ve just posted the below on our Facebook Page and wanted to share here too. I hope it’s of interest:   There are many ongoing conversations regarding the drug Kadcyla since last Wednesday when Nice made the decision not to recommend it for use, and some of you have asked if there is anything you can do to challenge the decision.   Breast Cancer Care is a registered stakeholder in the current public consultation about the draft recommendations which are open until Monday May 19 th . We will be submitting a response, stating how many people have contacted us on this issue. Thank you to everyone who has already been in touch and raised their concerns.   If you would like your voice to be counted, please email campaigns@breastcancercare.org.uk. The more people involved, the more impact we can have.   On a broader level, Breast Cancer Care is contributing to the wider consultation on the Cancer Drug Fund and the proposed system of Value Based Assessment. We know that the current system isn’t working so we are working with other breast cancer charities to ensure the Government, not just MPs, hear the concerns of breast cancer patients.   Read our blog here: http://www.breastcancercare.org.uk/news/blog/parliament-hears-breast-cancer-patient-voices.   More information on the consultation can be found here: http://www.nice.org.uk/getinvolved/currentniceconsultations/MethodsOfTechnologyAppraisalConsultation2014.jsp   One of the suggestions that has been made is a petition. There doesn’t appear to currently be an open petition regarding Kadcyla and its funding. If you would like to start a petition, we would recommend setting one up on www.change.org; it’s easy and very effective. Alternatively, if you would prefer to contact your MP individually, information on how to do that can be found here: http://www.breastcancercare.org.uk/sites/default/files/files/pdf/how_to_contact_your_local_politician.pdf. If you are unsure as to who your local MP is, www.theyworkforyou.com has a postcode search.   Thank you, Helen  ... View more

Hi Jenifer and cornishgirl, apologies that we’ve not been back to update you on this.   We added a link to Latest Posts in the Featured threads section of the homepage as a trial. This was a quick way for us to include the link for people who wished to see, at a glance, what the most recent posts are. We certainly take your point about it being trickier to access on mobile though!   The user research we conducted prior to the forum re-launch strongly indicated that some people found having Latest Posts very visible and prominent on the homepage of the forum distressing. We take that research seriously, so we won’t be making any changes without first going back to our users to seek their opinions.   We are a small team with finite resources, so we’re not always able to do things as quickly as we’d like, but we hope to be able to do this soon.      Thank you for your patience in the meantime,   Helen  ... View more

Hello all, I just wanted to pop on to the thread to offer thanks to you all for being so supportive of each other on here over the past few days and weeks. We want the Breast Cancer Care forum to be a safe, secure space for everyone affected by breast cancer to talk and share experiences.   It’s such sad news that Kerry has died. I’m really heartened to see that many of you are signing the e-petition cornishgirl linked to, to call on the government to provide more funding for pancreatic cancer. I’ll be circulating this amongst the team here too.   Your conversation about the language used around a secondary diagnosis is a really interesting one. It’s a difficult and very personal issue, and we’re listening to the perspectives raised here with interest. And, on the subject of Breast Cancer Care continuing to raise awareness of secondary breast cancer (mrsblue raised this question yesterday, I believe), I wanted to assure you that the team is keen to reach out to as many of you as possible to help shape our future activities. I’ll be sure to keep you all updated once more details are confirmed.   Thank you, Helen  ... View more

Hi  summaluv,    Lulu34's right, I think we do have other members who've experienced a diagnosis while pregnant. I'd recommend taking a look in our Younger Women and Families thread for support too: http://forum.breastcancercare.org.uk/t5/Younger-women-and-families/bd-p/4449   I'm so sorry you're having to face this; you're not alone - keep posting and if you need to talk, our Helpline is here too ( 0808 800 6000).   Helen  ... View more

Hello  orangecat,    Just popping on to see if I can help with the problem you mentioned about logging on - was this for Live Chat or the forum? Are you using a laptop/PC?    We'll see if we can get to the bottom of this!   Helen  ... View more

Hello,   Thanks for following up   Jenifer  and  cornishgirl .   We're planning a review of the forum in a few months' time, once the dust has settled after the move. Until then, we won't be making any significant changes to the site's structure or layout.    We're listening to all the feedback we've received here, particularly the requests to bring back Latest Posts, and we've added a link to the Featured threads section of the forum homepage, to test how that performs ( https://forum.breastcancercare.org.uk/t5/Forum-site-feedback/Latest-Posts/m-p/773534 )   We plan to run a poll or survey on the forum again when we get to the review stage, to ensure that we reflect the wishes of as many of you as possible.    Lulu34 - I agree about editing posts so we've changed that to have no time limit. You should now be able to go back and make your changes!   I hope that helps – we’ll be sure to keep you updated.   Helen  ... View more

Hi  sweetanimo,  beanbob &  doodlecat, apologies for the delayed response from me. I'll be sure to add you to the group now and send you the link.   thanks! Helen  ... View more

Hello belinda and 2catlady,   We've created an invite-only thread for users who wish to share feedback and help us to shape the next Secondary Breast Cancer Awareness Day.   I'll email you the details so you can join in.   Many thanks, Helen ... View more

Hello again Lemongrove,    Our Clinical team has reviewed the feedback you provided on the brain metastases factsheet and provided the following response: At Breast Cancer Care we review all our publications and web content every two years. We last updated the factsheet Secondary breast cancer in the brain in May 2012. Part of this process includes external reviews from oncologists, radiologists and specialist nurses as well as lay readers who have had a diagnosis of breast cancer.   As you know the management of secondary breast cancer is very complex, requiring an individualised approach to treatment and care. This is most evident in the treatment of secondary breast cancer in the brain. We have tried in the factsheet to address the key issues relating to diagnosis, symptoms, treatment and living with secondary breast cancer in the brain. We aim to give information that will be applicable whatever your circumstances and believe the factsheet is an accurate reflection of this. We also emphasise that your treatment team will discuss any treatment options that are appropriate for you.   I hope this helps. We also have a feedback form on the website if you wish to direct further comments to a specific team: http://www.breastcancercare.org.uk/about-us/feedback    Many thanks, Helen ... View more

Hi Lemongrove,    I've passed your feedback about the b rain metastases leaflet over to our Clinical team, who'll respond in due course.   Many thanks, Helen ... View more

Hello Angelfalls and Cornishgirl,   I’ve spoken to the team – here are some answers to the questions you’ve raised; hopefully they’ll go some way to addressing your concerns, as well as give you a bit more background about why it was needed.   Our last rebrand began in 2006 and since then lots has changed – the economy has got much worse and charities have become more professional in the way they talk about themselves and ask for money. It means we need to work harder for attention and to attract funds in order to provide our services and reach more people with our support.   Throughout the process, we worked really hard to keep costs down and we’ll be bringing in the new look gradually. So we don’t waste money, we’ll be using up stock of our old materials, rather than replacing them immediately. We won’t be throwing things away. It was a big decision to spend money on a new look. But we’re confident the cost will be more than recouped by the additional income and support we will attract with this stronger, bolder and more distinctive new brand.   It was also a big decision to add another colour, orange, to our identity. The biggest challenge we face is standing out from the sea of pink - we can’t stay purely pink if we want to set ourselves apart from the other breast cancer charities as a support organisation. However, the colour pink is closely linked with breast cancer in people’s minds and is well liked by many of our supporters. So we kept a good proportion of pink in the logo and in our visual identity across the board.   We’ve had fantastic feedback during the research we carried out on the new brand; lots of people are really excited by the new look. And we’re looking forward to working with our volunteers and supporters to roll out the brand over the coming years. More importantly, we hope it will help us achieve our long-term ambition to ensure everyone diagnosed with breast cancer knows that Breast Cancer Care is here to support them.   Finally, it may appear that there have been lots of changes to the forum over the past few weeks, but this has been a gradual process of bringing together both the new forum and the new brand identity.   I hope this helps, Helen ... View more