Knowledge is power!
Ok we all hear of the importance of clinical trials and that without them we could not get the advances in medicine that we have had and that these advances are saving lives. Well ICORG the body over clinical trials in Ireland held a patient advocacy group meet in Dublin Friday which I atteneded. There were I'd say approxomately 200 people which was fantastic and the top table spoke of the benefits of having patient input into trials and getting more people involved, however I had to endure 2 of the people at the top table state on more than one occassion that they were lucky that they only had breast cancer and could be cured. They were also lucky that they were Dublin based. I became increasingly annoyed and frustrated. There's no such thing as "just a Cancer". I felt sorry for myself to be one of the unlucky ones in the room with metastatic breast cancer but I am also aware that there were others there with other cancer types that are harder to treat and these two ladies signing their tune. Anyhow I spoke of my frustration when they eventually opened it to the floor after 45mins and made contact with Robert O'Conor head of research in the Irish Cancer Society. At present there are no trials available for my type of cancer but more needs to be done to get the information to patients around the country about trials and their benefit for both the current patient and those to follow. After that meeting I went to meet with some ladies from Europa Donna Ireland in an effort to discuss moving forward with plans to set-up a support network for metastatic breast cancer patients. They are to receieve funding from Pfizer to do this and it is something that I am very passionate about. Watch this space for developments on this.