Time for a new treatment
Hi everyone
Some of you know I was expecting results yesterday. Unfortunately they were not good. I guess we knew it would eventually happen but you always have that little glimmer of maybe it's all ...
Forum Discussion
Cancer Voices Victoria recently made a submission to the Cancer (Reporting) Regulations 2012 Regulatory Impact Statement (RIS). The response from the Department of Health seems to indicate that there is a known data deficit in the area of collecting staging information and time to regression but that this will be addressed in the future.
I know the public system is mandated to report this information but I was surprised to read "currently the Regulations as they stand and as proposed under the RIS require this information from existing notifying organisations and will include private radiotherapy and day oncology centres in the near future."
How much data is being collected and never making it to a national data base?
It seems that the more we drill down into Stage 4 disease the more black holes we discover. How can decisions be made on data that is not truely representative of our experience?
If the switch is made to more research into Stage 4, then as others have said, all breast cancer patients will benefit.
Love the suggestion regarding an article in The Beacon, however most breast cancer organisations tend to separate their membership according to staging, eg. separate mail outs for Stage 4 women. Shouldn't all women have this information? What has divided us into pre Stage 4 and post Stage 4 women? We all have breast cancer! Even the latest publication of Verve (Arimidex users) had 12 stories of women who had survived breast cancer. Only one was at Stage 4, and you had to know what you were looking for to pick it, not openly stated! Not representative of statistics, should have had at least 3-4 articles by Stage 4 women. We are being marginalised even by the phamaceutical companies!
Agree with the comment regarding breast care nurses, I am currently raising this issue at my treatment hospital and requesting that they nominate a nurse with additional training for Stage 4 women. Our needs are different and because of advancing treatment options we are LIVING with this disease for much longer.
Getting off my soapbox and going out for lunch
With love
Joy K