Ethical and Legal Considerations in Breast Density Workshop South Australia 23 August 2018

@Romla I suppose what it boils down to is this.

These are OUR bodies. The density of our breasts affects the decisions we make about how to approach 1) our health, and 2) the decisions we make round our cancer treatment.

How is it ethically correct to withold this information from us?

1) How to approach our health.

If after her first mammogram a woman is informed that she has dense breasts, she should be told as a matter of course that in the future, she should make sure she has a 3D mammogram and an ultrasound, rather than the standard 2D mammogram alone. She should also be informed that having dense breasts could predispose her to developing breast cancer. And knowing that, she should have yearly rather than bi-annual scans, and to be vigilant with self examination.

2) How to approach our cancer treatment.

This was where this issue came into focus for me. A mammogram found my tumour. I was not told about the density of my breasts. A re-excision for margins found, in pathology, 4cm of DCIS. These occult cells had not shown up in the mammograms or ultrasounds. I was still not informed about my breast density.

I had to decide whether or not to have a double mastectomy. Facing this decision you should have all the information. And this information should include a) the likelihood of developing further cancers, which can be influenced by breast density. And b) the likelihood of scans being able to detect cancers. Which is influenced by breast density. In my case I proceeded with the mastectomy. And in the pathology yet more DCIS was discovered, DCIS that had not been seen on any scans.

What right does the medical community have to withhold this information from me? Being diagnosed with cancer you have to make a lot of very serious decisions. Why are we being infantilised by having this particular, highly pertinent information withheld?

I understand that in WA where women are told about their breast density, the result has not been mass panic. Rather, women have been more vigilant about having regular mammograms. Is money a reason, or the reason that we're not told about our breast density? That it might cause pressure on mammography services because of increased numbers? I sincerely hope not.