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Online Events for and around SBCAD 2013

27 REPLIES 27
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Member

Re: Online Events for and around SBCAD 2013

Hi sweetanimobeanbob & 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 

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Member

Re: Online Events for and around SBCAD 2013

I can't access either. I have given feedback on SBCAD too.
Could you please send me details?
Thank you!

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Member

Re: Online Events for and around SBCAD 2013

To BCC team, who is invited to the invite only thread? Will it include those of us who emailed you expressing interest in giving views? I did that but have not had any communication from you.
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Member

Re: Online Events for and around SBCAD 2013

Thank you. Smiley Happy ...goes away to try and think of something sensible to write...

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Member

Re: Online Events for and around SBCAD 2013

Helen, can you add me too. Thanks.
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Re: Online Events for and around SBCAD 2013

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

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Member

Re: Online Events for and around SBCAD 2013

Hi,I clicked on link too,with no luck!!
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Member

Re: Online Events for and around SBCAD 2013

Hi Belinda
I will find out for you today, apologies
Best wishes
Lucy BCC

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Member

Re: Online Events for and around SBCAD 2013

Hi Vicki, I just clicked on the link which told me I didn't have 'sufficient privileges' to use it...confused and puzzled.
BCC mods, Hi, what am I doing wrong, can you help? Woman Frustrated

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Member

Re: Online Events for and around SBCAD 2013

It is really difficult and confusing to find which thread to give feed-back on about Metastatic Breast Cancer Awareness Day.  I'm sure that there was one, and I have been trying to find it to see if anything has been added.  The whole thing is just like the day itself ... a bit of a damp squibb and almost impossible to find out about.  I did find it once, and then it wouldn't let me post in it so I started a separate thread, only to find out that it should have been put in the one that I wasn't allowed to contribute in the first place.

 

Actually having a look ... you have it under a separate Board in "I have s breast cancer" (won't use that word which implies inferiority, to me at least!).  Maybe some better link could have been put in so that it is easier to find so others can contribute.  The original discussions about MBCAD was on this Board.

 

Would anyone else like to contribute ... and also comment about the idea of making 4.4.2014 the Stabe IV Metastatic Breast Cancer Awareness Day ... ?

 

http://forum.breastcancercare.org.uk/t5/Secondary-Breast-Cancer/Your-views-on-Secondary-Breast-Cance...

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Member

Re: Online Events for and around SBCAD 2013

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

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Member

Re: Online Events for and around SBCAD 2013

Hi Lemongrove, 

 

I've passed your feedback about the brain metastases leaflet over to our Clinical team, who'll respond in due course.

 

Many thanks,

Helen

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Member

Re: Online Events for and around SBCAD 2013

Sorry BCC but am I the only one who thinks SBCAD was a total wash out. Two live chats and a one day discussion forum - is that it? I thought SBCAD was about raising awareness amongst the general public of the problems people dealing with secondary have to face.

 

As for BCC being so generous as to put together some links for those of us with secondary BC, even this  has flaws. For example I have just downloaded a leaflet on being diagnosed with Brain metastases, and there are at least four mistakes in it.

Firstly there is absolutely no mention of meningeal mets (mets inthe membrane surrounding the brain), despite these being classified as brain mets. Secondly it states that Stereotactic Radiotherapy may be suitable if there are just one or two small brain mets. In fact as from April the 1st 2013, the number of mets is totally irrelevant. Whether a patient is clinically suitable for SRT and will receive  funding for this treatment depends on the total volume. So someone could have quite a large number of brain mets, and providing the total volume was less than 3.5cm they would be considered for treatment (although it would have to be on a Gamma-knife machine, because Cyberknife can only treat up to five). Thirdly BCC describe Herceptin as a treatment for brain mets, which again is incorrect because the molecules in Herceptin are too large to cross the blood brain barrier. That is why patients with Her 2 cancers who are diagnosed with brain mets are switched to another type of monoclonal antibody called Lapatanib, which is thought to cross the blood brain barrier. Finally BCC suggest that chemotherapy is not usually appropriate for brain mets because  it cannot cross the blood brain barrier. In fact Capecitabine (an oral chemotherapy) is frequently used to treat brain mets as it can and does cross the blood brain barrier (which is why it is usually teamed with Lapatanib). Also had BCC understood that Leptomeningeal metastases are classified as brain mets too, they would have discovered that intrathecal infusions of Chemo are often used for the treatment of Meningeal Mets.

 

Come on BCC. You exist to support, provide information and campaign, but if the above is anything to go by you desperately need to pull your socks up.

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Re: Online Events for and around SBCAD 2013

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Re: Online Events for and around SBCAD 2013

Metastatic Breast Cancer Alliance in the US which has just been announced.  This is the sort of thing that we need in the UK  http://www.mbcalliance.org/

 

https://www.youtube.com/watch?v=NyTAf3niEO0

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Re: Online Events for and around SBCAD 2013

I seem to have missed the first two online events and the third (live chat about dying) takes place on the evening of my birthday when I hope to be too busy celebrating still being alive !

Great that there were some specific events for this daybut I only just found details today too late to take part. maybe more advance warning would have seen a better response. I did check weeks ago but didn't find the details then.

It is also good to see the issue of 'secondary' breast cancer on the home page but overall I am really disasppointed by the lack of coverage in the media today.

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Re: Online Events for and around SBCAD 2013

I am encouraged to see that on BCC's home page there is now quite a lot about "secondary" breast cancer, with the theme (and hashtag) "What not to say"  Thanks to BCC for putting this together, and even more thanks to those of you with secondaries who have gone public and told about your own experience.

(Click the BreastCancerCare logo in the upper left corner of this page, to go to BCC's home page.)

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Re: Online Events for and around SBCAD 2013

Thank you Anna.

 

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Member

Re: Online Events for and around SBCAD 2013

Hi Anna,

I was also asked to wrote 500 worsdw hich I happily did, however I am unable to fund the dedicated web page. It would have been good for volunteers to have been told of the plans instead of us having to ask.

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Member

Re: Online Events for and around SBCAD 2013

Hi Belinda

 

Sunday will not be a live chat, but an open forum thread just for the day between 10am and 4pm.  Anyone and everyone is welcome to pop in and out during the day to chat or share experiences or how they are feeling.  This will remain open to public view so that it can help to raise awareness of what it is like to be diagnosed and live with secondary breast cancer.

 

There is another live chat on Thursday 17 October 2-3 with the focus on dying and end of life issues.  We have often been told that there are very few places that feel safe to talk about dying and how people have different views about how they would like to manage their own end of life.  We are hoping that Thursday will offer that safe opportunity for any who would like it.

 

Same log in procedures apply for Thursday's live chat.

 

Best wishes

Anna

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Member

Re: Online Events for and around SBCAD 2013

Hi Anna, I couldn't make today, hospital appointment. But could I jump in and join Sunday's chat, about 12-12.30 ish? I can't make the start.

And I would like to make the 17th's if I'm able? Haven't joined a live chat for ages, is it just the usual log in procedure?

Thanks! Smiley Happy

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Community Champion

Re: Online Events for and around SBCAD 2013

I am pleased to see there are extra sessions but I don't know how well these will be used because I had to search to find this information having been told about the extra chat during Tuesdays session.

This needs to be flagged up somehow so people can see it easily otherwise I fear it wil be the same usual people invoved and it would be really good and much more useful if many more Mets women partcipated

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Member

Re: Online Events for and around SBCAD 2013

Dear Beanbob

 

I agree, everyone's experience of living with SBC is individual to them.  No two people are the same, but many find that they share different aspects of their diagnosis, treatment, coping strategies etc with others.  The purpose of today's live chat is to provide a confidential space where anyone who wishes can share what it is like for them without judgment or expectations from anyone else.  This will be a space to share what is important to you, how you experience people or events perhaps differently then before your diagnoses.

 

We do have a regular live chat every Tuesday evening 8.30-9.30 which is not always possible for everyone to attend so this is intended as an extra opportunity for people with SBC to engage with each other in addition to the regular Tuesday night spot.

 

With regards to the answers and outputs from this forum I would like to assure you that they are already being noted and will most definately be used, along with any further individual responses and feedback, to help inform our planned activity for SBC next year.

 

I hope this has answered your questions, Beanbob

 

Best wishes

Anna

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Re: Online Events for and around SBCAD 2013

Hi Anne

 

Your story has been recieved, thank you, and will go live tomorrow on a dedicated web page where you and others  publicly share their own individual story of what it is like living with SBC.

 

I look forward to 'seeing' you on live chat this afternoon.

 

Best wishes

Anna

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Re: Online Events for and around SBCAD 2013

Hi Anne
I have sent your query to those concerned for feedback for you

Many thanks
Lucy BCC

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Re: Online Events for and around SBCAD 2013

Hi Anna,

I'm very interested to see what's going on for SBCAD as it seems to have been a bit quiet on it. I was asked by BCC several weeks ago to write 500 words on what living with SBC means to me but haven't heard anything since. I do think there needs to be public awareness in addition to online events and wonder why that this doesn't seem to be happening this year. I am doing my bit to spread awareness amongst my friends and my facebook page but I can only do so much.

I am only available for the live chat tomorrow and I will do my utmost to remember about it as memory is terrible - effect of the drugs!

 

Best wishes,

Anne

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Re: Online Events for and around SBCAD 2013

My reaction to 'what is it like living with SBC' won't be the same as others.  we are all at different stages.  

 

But to BCC I say this.  I would love to contribute but I can't.  I try to live as normal life as possible and i work  (so  setting your forum on a Thursday afternoon sends out a signal itself about your perspective). i cover up my status at work because I can (with the exception of my lovely understanding boss) and because right now i think it would not be in my interest to be more public.  I am juggling home, work, husband, friends and family just like my friends, but with hospital, physical effects and emotional rollercoasters attached.  

 

Would be interested to know whether you will be using the answers and outputs from these forum to inform your next phase/next year of campaigning and support?  

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Member

Online Events for and around SBCAD 2013

Dear All

 

There are 3 planned online events to mark Secondary Breast Cancer Awareness Day.  These are in addition to the information which will be shared on Friday 11 October.

 

  • A special live chat on Thursday 10 October 2-3pm - Let's talk about what it really means living with secondary breast  cancer.  This will be facilitated by a Clinical Nurse Specialist, Tara and Forum Coordinator Anna.
  • A dedicated forum discussion thread on Sunday 13 October - sharing and contemplating the impact of a diagnoses of metastatic breast cancer.  This will be open between 10-4 and will then be locked but remain on the forum to be read by anyone in the future. 
  • A special live chat on Thursday 17 October 2-3pm - Let's talk about  what is important to you when dying matters.  This will be facilitated by a Clinical Nurse Specialist, Tara and Forum Coordinator Anna.

Please could you indicate your interest in participating in any or all of these online events.

 

Best wishes

Anna