Breast Cancer Now Forum

Hi everybody, I’m sorry we’ve not responded sooner. However, please rest assured we are aware of your concerns and I can promise you we’re listening closely. We are currently reviewing the Secondary Breast Cancer Awareness Day campaign activity and will absolutely take onboard all the feedback you’ve provided about its theme and content. It’s your views and experience that help guide our campaign work. As soon as we have them, we’ll be sure to include you in any plans we have for SBCAD. Once again, apologies for this delayed response and thank you for your patience. Leah PS: bertie, I’m so sorry to hear your DLA renewal was turned down – please do get in touch with us if you feel you’d like any further advice or support: 0808 800 6000 ... View more

Many thanks to all of you for your feedback and comments on the Secondary Breast Cancer Awareness day survey. As Diana mentioned above, the survey is now closed and we are busy collating and analysing all of the feedback that we have received from this and other channels of research. Your feedback is invaluable to us and we very much appreciate the time that you have all spent in completing the survey and leaving your thoughts. We will be back in touch with you soon to let you know more as we develop this year’s Secondary Breast Cancer Awareness Day campaign. Leah ... View more

Yes, edited those links too so they should work. ... View more

Hi mrsblue I've edited your links so they should work now. Leah ... View more

Oops Martha - didn't see you'd already replied about subscribing 🙂 ... View more

Hi suffolklady - you can subscribe to a thread so you get notifications when someone posts something new on the thread. So if you want to subscribe to this thread, just go to the very first post (http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-chemotherapy/june-jewels-precious-shining-through) and click "subscribe to this post" which you'll find at the bottom of the post. You can choose whether you want to get notifications immediately, daily or weekly. Hope that helps. Best wishes Leah ... View more

Hi everyone We seem to be having some website issues this evening. The live chat session is running, if you can manage to log in, so do please join us if you're able to. http://www.breastcancercare.org.uk/community/chat Best wishes Leah ... View more

Hi everyone We seem to be having some website issues this evening. The live chat session is running, if you can manage to log in, so do please join us if you're able to. http://www.breastcancercare.org.uk/community/chat Best wishes Leah ... View more

No apologies necessary, Rattles! Apparently our lymphoedema publications (both prevention and for people with lymphoedema) are coming up for review in the next few months and I've highlighted this thread to the team so they can take your feedback into account when reviewing them. Also, the next issue of Vita magazine is featuring lymphoedema and what to wear for the summer, so keep an eye out for that. Keep giving us feedback and I'll make sure it gets to the right people. Leah ... View more

Thanks guys, I'll definitely pass that feedback on again. It's really useful to hear exactly what you'd find most helpful and see if we might be able to address that. I know we are doing some specific work on body image coming up, so I'll see if we've included elements related to lymphoedema in that. I'll also pass it on to our publications team, so they can take it into account when reviewing the information we produce. I'll also let the nursing team know how helpful you found your Ask the Nurse response, Elinda - I'm sure they'll be really pleased to hear it. Don't worry about giving us your feedback - it's the only way we'll know if we're meeting people's needs, which is obviously what we want to do! Best wishes Leah ... View more

Hi everyone, and especially Rattles, Elinda and Quail, who asked about the BCC lymphoedema sessions I had a chat to Suzi Copland, our Head of Services for the South, and here is her response: "As has rightly been pointed out on this thread Breast Cancer Care runs Information Sessions on lymphoedema. The aim of these sessions however is to provide information and guidance about lymphoedema (including reducing the risk and outlining the variety of treatments) rather than teaching people how to perform manual lymphatic drainage, which is a very specialised form of massage not undertaken until therapists have had intensive training. "Our Information Sessions usually have 15-25 people present and it could be hard to teach this size of group the techniques involved in manual lymphatic drainage because of differing individual needs and circumstances. This doesn’t mean that we would never provide an alternative type of service to address these needs in the future and I’ll certainly discuss this with the services team. Self lymphatic drainage methods are taught by MLD practitioners, once the client has been assessed and shown how to perform this safely. "Our Helpline and Ask the Nurse email service are also able to provide information and support to people on a whole range of issues associated with breast cancer including how to manage lymphoedema. They would also be able to signpost to local specialist lymphoedema services where available for callers. The Helpline is a Freephone number – 0808 800 6000. "Also just to say that The Haven runs lymphoedema classes and the Lymphoedema Support Network has produced self management DVDs and can help people to identify local therapists." I hope that's helpful. Best wishes Leah ... View more

If anyone's been reading about Angelina's decision to have a double mastectomy to reduce her risk of breast cancer (see her article in the New York Times here http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0) and wants to read more about breast cancer in families, genetic factors and risk-reducing surgery, here are some links to information. Breast cancer in families: http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/breast-cancer-families Breast cancer in families booklet http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32 Family history assessment http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/family-history-assessment Risk-reducing surgery http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/noticed-any-changes/risk-reducing-surgery Our helpline is also open if you'd like to talk about it - call 0808 800 6000. ... View more

Bumping up for latest posts - anyone in Cardiff up for this focus group? ... View more

Thanks Moorcow. If anyone's interested, you can read more about the report and the launch event here http://www.breastcancercare.org.uk/campaigning-volunteering/policy/breast-cancer-inequalities/lesbian-bisexual-women-breast-cancer ... View more

Hi Maggie1964 I think this is the very start of this project, so it's just in the one location at the moment. But if it's successful I imagine they might look to expand it. They might also know about other similar projects. It's not being run by Breast Cancer Care, so I don't have any more information I'm afraid, but if you take a look at their website or drop them an email I'm sure they'd be able to help. ... View more

Thanks for starting this thread, Tors, and thanks to everyone who has supported the team. The Fab1 team reached John O'Groats at 5 o'clock this morning and there were some hardy souls out there to greet them, as you can see here https://www.facebook.com/photo.php?fbid=10151552975900306&set=a.381323935305.205979.268801635305&type=1 [[wysiwyg_imageupload:3590:]] For anyone who wants to book the car, or support the team in other ways, go to the website http://www.fab1million.co.uk/ If booking the car is a bit out of reach, there's a chance to win the FAB1 car for the day and donate £5 to Breast Cancer Care at the same time. Just text FAB to 83222. Text entry to the draw costs 50p, plus your standard network rate. A £5 donation will be deducted unless you choose to opt out - more details and terms & conditions on the website. The road trip was just the start of this fundraising project, which we hope will raise a lot of money for our services to support people affected by breast cancer. ... View more

Hi Deb and welcome to the forum I'm just bumping up this post for you as you're right that there haven't been many posts in this section recently, but I know people do sometimes pop back so hopefully they'll say hi. In the meantime, you can contact our one to one peer support service http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support. I know we do have some peer support volunteers who are gay women, so definitely worth seeing if we can put you in touch. You can contact the team on 0845 077 1893 or email: ukpeersupportteam@breastcancercare.org.uk Best wishes Leah ... View more

You can see some of the other responses that the question got when we asked it on twitter here: http://storify.com/BCCare/is-it-feasible-to-go-to-a-music-festival-camping-d ... View more

Hi Lemongrove & Raechi I've got some information from our policy team about this: With regards to implementing NICE guidelines, it depends whether it is part of a technology appraisal or clinical guidelines. The NICE Guide to the methods of technology appraisal states that “The Secretary of State for Health has directed that the NHS provides funding and resources for technologies that have been recommended through the NICE technology appraisals programme normally within 3 months from the date that the guidance is published.” However, this only applies to recommendations coming out of technology appraisals (for example an appraisal of a breast cancer drug). The NICE fertility guideline is not a technology appraisal (it is rather part of the NICE Clinical Guidelines), so you would have to look at the wording in this particular guideline to see how NHS bodies should take the recommendations within it forward (this may be different for different recommendations within this document) See http://publications.nice.org.uk/fertility-cg156/about-this-guideline for more information on this guideline. The recommendation to extend treatment to women aged 40-42 does appear in the "key priorities for implementation" section http://publications.nice.org.uk/fertility-cg156/key-priorities-for-implementation#criteria-for-referral-for-ivf And this is what it says about implementation: "This guidance represents the view of NICE, which was arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summaries of product characteristics of any drugs. Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity and foster good relations. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties." With regards to charity campaigning, here is the Charity Commission guidance on the subject: http://www.charity-commission.gov.uk/Publications/cc9.aspx Some key points: "Charities can campaign for a change in the law, policy or decisions (as detailed in this guidance in section C4) where such change would support the charity’s purposes. Charities can also campaign to ensure that existing laws are observed." "In the political arena, a charity must stress its independence and ensure that any involvement it has with political parties is balanced. A charity must not give support or funding to a political party, nor to a candidate or politician." "A charity may give its support to specific policies advocated by political parties if it would help achieve its charitable purposes." "Can a charity organise demonstrations? The short answer: yes - a charity may in principle organise different kinds of direct action in support of charitable campaign activity." More info http://www.charity-commission.gov.uk/Publications/cc9.aspx#35 Hope that information helps. Leah ... View more