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Forum: Breast Cancer Voices

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Welcome to the forum

It's Vicky Lane, User Involvement Manager, here. Welcome to the all-new Breast Cancer Voices discussion forum, a place meet other Voices and find out what people are involved in, to ask questions about opportunities or discuss this month's opportunitie...

Posted by Vicky (BCC) on Wed Jan 20, 2010 5:13 pm with 2 comments

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Hi, this is Emma Skingsley, Involvement and Campaigns Assistant here at Breast Cancer Care. I work with Amarjit Kaur, Head of Involvement, to support our fantastic Breast Cancer Voices in their involvement across Breast Cancer Care. I’ll be here to an...

EmmaS (BCC), Fri Oct 29, 2010 11:15 am
Depression

I'm coming to the end of five years RX and have been on Aromasin for the last two and a half years. Within a few months of initial treatment I took part in the Ben Nevis Challenge and although not completing it because I fell and then lagged behind ma...

Posted by gentleninja on Mon Jan 09, 2012 10:23 am with 3 comments

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Hi gentleninja, I've spoken with the events team and they just wanted to let you know that they always welcome people that have an interest in one of our challenges. As an organisation, we understand that it's a big decision and potentially difficult ...

Mike BCC, Mon Jan 09, 2012 11:54 am
Secondary voices

I was involved with the Secondaries Task Force while it existed. Now I would like to know: How many members of Breast Cancer Voices are there now? How many have, or have had, bc? - presumably the others are health professionals? How many have secon...

Posted by mrsblue on Fri Nov 04, 2011 11:12 am with 3 comments

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Thanks mrsblue I will pass your comments back to Emma Best wishes Lucy

Lucy BCC, Fri Nov 04, 2011 8:12 pm
RE: Royal Marsden Hospital, Excellent care?

Hello Dears, Sorry about the length but, I want to share this with you On the 10th of October, I was advice by my GP after a consultation with the breast cancer nurse at UCH hospital where I was seen the 19th of September for a particular consultati...

Posted by happynipple on Wed Oct 12, 2011 7:57 pm with 10 comments

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I have had what I regards as a first rate service at Charing Cross Hospital, but I had a pm from someone saying they had gone elsewhere because their experience there was terrible (guess it's horses for courses). I'm part of a small informal support gr...

Lemongrove, Fri Oct 21, 2011 9:10 am
Standards in diagnosis

Hi I feel I have been badly let down by my local breast services who dismissed mine and my GP's concern about a palpable lump only for me to be re-referred several months later to find, eventually, that the lump was not in my mind but cancer, even th...

Posted by merechat on Fri Aug 12, 2011 12:22 am with 0 comments

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Hi I feel I have been badly let down by my local breast services who dismissed mine and my GP's concern about a palpable lump only for me to be re-referred several months later to find, eventually, that the lump was not in my mind but cancer, even th...

merechat, Fri Aug 12, 2011 12:22 am
Call for models for a Breast Cancer Care photoshoot

We are looking for people affected by breast cancer to take part in a photoshoot for Breast Cancer Care’s website, patient information and fundraising material. It is important to us that we feature real people who have been affected by breast can...

Posted by Mike BCC on Fri May 27, 2011 10:14 am with 4 comments

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Choccie, I am going on the Monday, would be lovely to meet you xxx

stargazerlily, Sat May 28, 2011 12:44 am
Research: body image after breast cancer surgery

Hello We're helping a researcher from the University of Southampton with some research. She's looking for women who are about to have surgery to take part in some questionnaire-based research about body image. If you are about to have a mastectomy or...

Posted by Leah BCC on Thu Feb 17, 2011 11:12 am with 2 comments

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Dear Helen, i think this is an excellent area to research - personally I don't think enough is done for women undergoing mx and helping them adjust to their new body change.In my own experience, there was alot of encouragement and almost expectation o...

happyshopper, Mon May 02, 2011 8:40 pm
Press request: have you found support online

Hello everyone We've been approached by a women's weekly magazine. They are looking to speak to a woman, aged over 30, who has found support online - in a forum, on Facebook, or even through Twitter - for breast cancer and/or depression. They are look...

Posted by Leah BCC on Tue Apr 05, 2011 2:30 pm with 0 comments

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Hello everyone We've been approached by a women's weekly magazine. They are looking to speak to a woman, aged over 30, who has found support online - in a forum, on Facebook, or even through Twitter - for breast cancer and/or depression. They are look...

Leah BCC, Tue Apr 05, 2011 2:30 pm
Survey: moving forward after treatment for primary BC

Posted by Leah BCC on Tue Feb 22, 2011 1:39 pm with 2 comments

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Also, we are looking for people who would like to share their experiences in this area with the media (interviews in local papers etc). If you might be interested in doing this, please email laura.grossart@breastcancercare.org.uk Thanks Leah

Leah BCC, Mon Mar 07, 2011 3:53 pm
RE: Cyberknife funding petition

Thanks so much to everyone who has signed over the past two days. So far we are up to 120 signatures in two days which is great - and have even got an MP to sign! Please can I ask those who have signed to also get their contacts to sign. If anyone is g...

Posted by Lemongrove on Thu Jan 27, 2011 8:24 pm with 13 comments

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Well I don't think anyone is suggesting that it's a case of one or the other, are they ?. Radiotherapy in general is incredibly powerful, and in most cases, conventional radiotherapy would be the right option. However, for tumours in tricky areas, tech...

Lemongrove, Sat Feb 12, 2011 12:58 am
Please sign my petition - NHS funding for Cyberknife now.

I am petitioning to end The South East Coast Specialist Commissioning Groups blanket ban on funding Cyberknife. The SECSCG consider funding applications for specialist treatments like Cyberknfe on behalf of PCT's in Surrey, Sussex and Kent. One Senior...

Posted by Lemongrove on Tue Jan 25, 2011 2:51 pm with 53 comments

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Also done

juliet66, Mon Feb 07, 2011 11:57 pm
breast cancer research

Just saw this on the BBC news website: "A Bristol researcher is seeking the help of 300 black, south Asian and Caucasian women to explore their experience of breast cancer treatment." http://www.bbc.co.uk/news/uk-england-bristol-12345788 I think this...

Posted by m1yu on Wed Feb 02, 2011 7:11 pm with 1 comments

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Hi M1yu I'll pass this on to see if we can find out more for you. Jo, Facilitator

Jo BCC, Wed Feb 02, 2011 8:28 pm
Derriford NHS Hospital Plymouth - purchases Cyberknife

Derriford Hospital in Plymouth have just announced that they are buying Cyberknife and will start accepting patients at the end of 2011. That means by the end of 2011 four NHS Hospitals will have Cyberknife. That is why it is vital that we challenge PC...

Posted by Lemongrove on Sat Jan 29, 2011 2:11 pm with 0 comments

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Derriford Hospital in Plymouth have just announced that they are buying Cyberknife and will start accepting patients at the end of 2011. That means by the end of 2011 four NHS Hospitals will have Cyberknife. That is why it is vital that we challenge PC...

Lemongrove, Sat Jan 29, 2011 2:11 pm
Breast Cancer Voices: breast cancer on a low income

Take part in our December ‘In Perspective’ event We are looking for a Breast Cancer Voice to speak from a patient perspective at the next 'In Perspective' event. We would like to know if anyone is available to speak at the event from the following per...

Posted by EmmaS (BCC) on Wed Nov 10, 2010 4:18 pm with 1 comments

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Hello everyone, We have now rescheduled this event for Thursday 27th January 2011, 6-8pm. The venue will still be Convocation Hall, Church House Conference Centre, London. If you would like to join us for this discussion evening, RSVP by 21st January...

EmmaS (BCC), Tue Jan 04, 2011 12:23 pm
NHS Reforms

Hello everyone, As you may know, the Government is consulting on their wide-reaching plans to reform the NHS. Their aim is to make services more responsive to the needs of patients. They intend to do this by giving patients more choice in where they a...

Posted by EmmaS (BCC) on Fri Dec 03, 2010 10:39 am with 16 comments

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Hi everyone, Thank you to everyone who has taken the time to complete these surveys. eilidh7's - I've checked with our Policy Officer, Kiran Dhami, who has confirmed that these surveys apply to England only. Sorry if this is unclear in the survey tex...

EmmaS (BCC), Mon Dec 06, 2010 5:19 pm
Help us develop the services map on our website

Hello everyone, Have you seen the interactive Map of Services on our website developed to help people affected by breast cancer find the services they need in their area? If not, take a look at it on the website at http://maps.breastcancercare.org.uk...

Posted by EmmaS (BCC) on Wed Dec 01, 2010 4:13 pm with 2 comments

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Interesting. Makes you realise how much support some areas of the country get compared to others.

xwelcomex, Thu Dec 02, 2010 12:03 am
How to join Breast Cancer Voices

Breast Cancer Voices is Breast Cancer Care’s user involvement scheme. Voices bring their experience and expertise to shape different aspects of the work we do. We currently have over 600 Voices from a range of backgrounds from across the UK. We’re loo...

Posted by EmmaS (BCC) on Fri Oct 29, 2010 11:17 am with 0 comments

Latest comment

Breast Cancer Voices is Breast Cancer Care’s user involvement scheme. Voices bring their experience and expertise to shape different aspects of the work we do. We currently have over 600 Voices from a range of backgrounds from across the UK. We’re loo...

EmmaS (BCC), Fri Oct 29, 2010 11:17 am
new section for lesbians and bisexual women

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Posted by norberte on Fri Oct 15, 2010 3:51 am with 0 comments

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norberte, Fri Oct 15, 2010 3:51 am
Failings in the treatment of Stage 4 Breast Cancer

Since being diagnosed with metastatic cancer in February 2010, I have become aware of certain serious failings, and have decided to outline these here for others to comment on. (1) NICE have produced guidelines which recommend that Doctors should not b...

Posted by Lemongrove on Sun Oct 10, 2010 12:41 pm with 10 comments

Latest comment

Lemongrove, Thanks for info. What gets me is this fixed "3-months wait" to see whether the hormonal therapy is working. Mine took 2.5 months to show that it wasn't and I had to wait for the 3 months was up to organize scans etc. By the time the scans...

m1yu, Tue Oct 12, 2010 5:36 pm
RE Becky Smith

http://www.dailymail.co.uk/news/article-1270160/Betrayed-NHS-Doctor-gave-life-health-service-refused-vital-cancer-drugs-save-her.html?ITO=1708&referrer=yahoo Hello ladies, I am posting a link to an article on the daily mail about this woman victime o...

Posted by happynipple on Sat May 01, 2010 2:46 pm with 3 comments

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Actually MSMolly, I think she was initially turned down by another PCT. In any case, I was under the impression that we have a National Health Service, so it shouldn't matter where you live in the UK. Also I don't think it would be very practical for p...

Lemongrove, Sun Oct 10, 2010 12:59 pm
Help us improve Breast Cancer Care's online forum

As you know, Breast Cancer Care’s online forum is an important source of support and information for people affected by breast cancer. We’ve always had a lot of feedback from people using the forum, but we’d like to create a more formal user panel as p...

Posted by Leah BCC on Thu May 27, 2010 5:32 pm with 6 comments

Latest comment

Thanks to all those who have replied. If anyone else is interested, we're still accepting applications. Leah

Leah BCC, Tue Jun 29, 2010 9:49 am
Models needed

We are looking for people affected by breast cancer to take part in a photo shoot for the new covers of Breast Cancer Care’s patient information booklets. It is important to us that we feature real people who have been affected by breast cancer in our...

Posted by Lucy BCC on Thu Apr 22, 2010 1:18 pm with 10 comments

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Thank you both :-)

Sabby, Sat Apr 24, 2010 10:36 am
Breast Screening Debate

Dear Breast Cancer Voices Breast Cancer Care is launching a new series of debates on the hot topics of breast cancer which aims to bring together patients, health care professionals and policymakers together to debate key issues facing people affected...

Posted by Vicky (BCC) on Thu Feb 25, 2010 4:36 pm with 11 comments

Latest comment

I have read everyones story with great interest. I would like to see the use of MRI scans being discussed as a screening tool instead of mammograms - indeed, since the age of screening is being lowered to 47, I believe that younger women should have th...

happyshopper, Wed Mar 17, 2010 9:11 pm
Have you had a delay in getting your prescriptions?

Hi everyone Our press team has asked me to post the following to see if there are any Breast Cancer Voices who might be willing to help and share their story. Thanks Vicky Breast Cancer Care’s press team is increasingly hearing from journalists wri...

Posted by Vicky (BCC) on Fri Mar 05, 2010 4:37 pm with 0 comments

Latest comment

Hi everyone Our press team has asked me to post the following to see if there are any Breast Cancer Voices who might be willing to help and share their story. Thanks Vicky Breast Cancer Care’s press team is increasingly hearing from journalists wri...

Vicky (BCC), Fri Mar 05, 2010 4:37 pm
BBC 2 Life and Money Documentary

Hello all This might be of interest to Breast Cancer Voices: BBC Television is making a major new documentary series about life and money. As part of the research, the BBC are looking to speak to people about the following areas: Does money matter ...

Posted by Vicky (BCC) on Thu Feb 25, 2010 11:47 am with 0 comments

Latest comment

Hello all This might be of interest to Breast Cancer Voices: BBC Television is making a major new documentary series about life and money. As part of the research, the BBC are looking to speak to people about the following areas: Does money matter ...

Vicky (BCC), Thu Feb 25, 2010 11:47 am

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