Advanced breast Cancer Second International Consensus Conference Nov 2013 Lisbon

Hi I wonder is anyone from Breast Cancer Care attending this conference as I notice there is a patient advocacy programme. It looks very interesting and I wonder if plans to disseminate/ discuss the findings/reports on this forum. Many thanks best wishes fi
abc-lisbon.org

Hi Fiona

I will pass this on to our managers and see if they have any info for you.

Kind regards,

Jo, Moderator

Interesting to see those who are members of the Breast Cancer Patient Advocacy Committee.  Dian “CJ” M. Corneliussen-James , Musa Mayer and Shirley Mertz are all major players in the Metastatic Breast Cancer advocacy world in the US.  Therefore you can be sure that MBC patients will be at the forefront of the workshops they will be leading.

 

CJ is one of the founders of METAvivor who are the only non-profit I have come across who give 100% of their funds raised to Metastatic Breast Cancer research.  Shirley Mertz is the chair of the Metastatic Breast Cancer Network who recently had their conference at MD Anderson in Houston TX.  She used to work at the White House.  Musa has written and campaigned widely for MBC although I believe she is not Stage IV.  CJ and Shirley are both living with MBC.  I will contact CJ as see if she can provide some feedback because BCC sound very reluctant to share any info. 

 

Why are they going to an Advanced Breast Cancer conference if they are not really interested.  Other than keeping BCC on the map the replies don’t really sound very interested in being there to represent us.

CJ says that she will get back to me after the conference, though I will have to remind her to do so.  Looks as though this takes place every two years in Lisbon … anyone up for going in 2015?

 

Vicki xxx

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Hope the scans show nothing new Fiona.  Scanxiety - yuk.

 

The trouble with these sorts of conferences is that they usually take place in rather posh and expensive hotels etc and no one seems to think about those on a budget level.  The Metastatic Breast Cancer Network in the US has a conference every year (it was in Houston TX with close links with MD Anderson speakers etc), but they have ‘scholarships’ to help with travel and accommodation for those who may otherwise not be able to attend.

 

I wonder why it is held in Lisbon every two years?  Somewhere warm in the winter?  Hopefully it will give more European hospitals and groups a chance to exchange info, especially as ASCO was not long ago and quite a lot of new stuff always comes out of that conference.  It does always seem as though things are going round and round in circles with research because no one will try anything really new, or research anything that can’t ultimately be patented by drug companies who spend more on marketing that they do on research and development.  But is it profitable???  Not the right question … does it save lives???  Better question.

 

Vicki xxx

Hi everyone

Just to let you know that there will be blog about the findings from the conference and we will be sharing the link when it is available.  We are very conscious about duplicating work and feel that if there is a single source of information there is less chance for misinterpretation.

Best wishes

Anna

FDear Everyone

As promised the blog link, entitled Its Time to be Heard.  This has been written by Lizzie one of our Policy and Campaign team.

breastcancercare.org.uk/news/blog/it-s-time-be-heard?utm_source=Homepage&utm_medium=blog&utm_campaign=It%27s

Best wishes

Anna