wingman
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Re: What research should we be doing?
Hello All, Thank you very much for all the comments and suggestions. When I asked what research should we be doing it was very much an open-ended question without any specific direction in mind. I am a big believer in research directions being set through engaging with the people who have experienced the disease first hand. There is a big move globally and in Australia towards this, as more and more researchers are realising how much more impact our work can have if it is guided by the people who know it best. One of the central messages I have gained from hearing the posts on this thread is that breast cancer diagnosis, treatment and survivorship can be very isolating and the psychological effects are underappreciated. We need to develop better models of care that treat the whole person, and that care needs to be on a continuum, through all the stages of the disease and after treatment has ended. With breast cancer being as common as it is, and treatments improving all the time, there are an enormous number of people living with the long term impact of the disease. It is a big issue with a lot of different aspects to it, requiring input and commitment from many different health providers, government, health economists, patients. This is a big thing and needs to take time for the ideas to crystalise. Sorry if my lack of response to replies on this thread caused some problems. I have been reading them but not able to respond to them as much I would like with my workload and family commitments. Also, being new here I didn't know the protocols. If it would be appropriate to close the thread then I can request this.8Views3likes0CommentsRe: What research should we be doing?
Wow I'm really overwhelmed by these responses, thank you for this. There is a lot to take in, this will take me a while. A few themes coming out though about side effects of hormone therapy, emotional well being, stage 4 cancer, and increased understanding/education for health professionals. I will have a think and a chat to my colleagues about these. I work with a group who are interested in how estrogen affects the brain, their research is unrelated to breast cancer treatment, but I wonder if they might have a fresh perspective on the "brain fog". And breast density has come up too. If you are interested in where we're at with density notification in Australia please have a look at the summary we put together https://www.informd.org.au/density-notification.html Jo, thanks for the link to your campaign about mammography screening for women under 50, I will have a look at it. Yes, density is part of the problem here - dense breasts are more common in younger women and this lowers the sensitivity of the mammogram. You asked about Australian stats, we don't have statistics on frequency of different breast density categories in Australian women, we have to rely on American data https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4200066/. If you follow the link here you can download a PDF of the article. Figure 1 shows the prevalence of density categories broken down by age groups. In women aged 40-44, 13% have D density (extremely dense), 44% have C (heterogeneously dense). In women aged 45-49, 12% have D and 43% have C. Breast cancer survivors have been changing the world for decades in so many ways. They are the reason why we have foundations such as National Breast Cancer Foundation who have been enormously successful in driving the research forward. BCNA, founded by Lyn Swinburne, is an organisation with a very strong advocacy voice nationally. And of course the dearly missed Nancy Cappello, who was the inspiration behind the first breast density notification law in the USA. I do hope you are aware of the power you have as individuals and as a collective. Please keep writing in your suggestions.1View0likes0CommentsWhat research should we be doing?
Hello BCNA community! This is my first post. I'm a scientist working on breast cancer and I was looking through some of the threads here and it strikes me that the issues we scientists think are the important ones to study may not be the only ones where research is urgently needed. So my questions to you are: What outcomes should we be working towards that you think are most important? Are there issues to do with breast cancer diagnosis/treatment/survivorship/anything else that you feel are being overlooked in research? Looking forward to hearing any thoughts on this! xx2KViews0likes63Comments
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