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

The user and all related content has been deleted.

@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.

Hi all,
Danielle Spence, BCNA's Director of Advocacy, Policy and Programs will be attending the workshop and would love those of you who are going to come up and introduce yourselves to her.
Looking forward to hearing how it goes!

Hi jeanbean. I'm looking forward to meeting you and your husband in Adelaide and happy to know your husband is a speaker there. Safe travels, Gerda (gevans)

Thanks @joannie. I actually had a 3D mammogram both times, because my GP referred me to an imaging place rather than to Breastscreen. I do have a good GP who I think has always tried to the best for me.

@romia - it is great that you are going. I will be interested to read your thoughts after the conference. 

The user and all related content has been deleted.

When  I found a lump in 2016 at age 39 I had a mammogram, ultrasound and biopsy. That lump turned out to be a fibroadenoma. The report noted that my breasts are dense, but I was not informed that meant breast cancer would be more difficult to defect and was left feeling relieved that I did not have cancer and possibly a bit complacent about it.

When I found another lump in June this year, I was diagnosed with a 24mm triple positive IDC after another mammogram, ultrasound and biopsy.  I was told I probably already had it in 2016 but that it likely wasn’t identified because of how dense my breasts are. My breast specialist told me this time that the mammogram and to some extent the ultrasound were not very useful for me and she referred me for an MRI which showed the tumour clearly.

I have found it a bit difficult to deal with the fact that it was not identified in 2016 and was left to grow for 2 more years.

I hope other women with dense breasts are given better information in future. I am very lucky I found this lump when I did. While it was agressive and fast growing it had not spread to my lymph nodes.

I try not to focus too much on the delay that I experienced in being diagnosed and instead on the fact that I found it when I did and got it checked out straight away. 

Following my diagnosis, my older sister went and had a mammogram, ultrasound and MRI. She had a very good experience was informed that her breasts are also very dense and a mammogram was next to useless for her. Thankfully, she does not have cancer and is now aware that mammograms alone are not likely to be useful for her in future and so will ensure she has additional screening. 

@Romla   You could also use the analogy of a car mechanic who notices a slightly dodgy line to the brakes ... a kink or a nick, that could cause the brakes to fail at some time in the future ..... if he does NOTHING about it & only does what he was told to do & doesn't inform the driver of a possible brake defect ...... if the driver WAS killed as a result of the brakes failing further down the track - a forensic check on the car's history would show the mechanic as the last person who checked it out - and he could possibly be held liable for the fatality & charged with Manslaughter!

Same with Dense Breasts - the radiographers can SEE the dense breast tissue in the mammogram (which may be hiding a cancer or 2 - as happened with me) yet they didn't inform me that I should undergo an ultrasound as a precaution.  Invasive Lobular Cancer is the one that is often only detected at the Stage 3-4 level when the tumours are already large - and often already spread to the nodes & beyond ... and as we all know, they can be fatal if not caught early enough & removed/chemo/radiation.

They say that Ignorance is not a defence in law ..... but in this case, the ignorance of the Breast Cancer Patient that can be attributed to not being properly informed - I reckon, COULD be used as a defence in law!

Surely they should fear actually BEING CHARGED with knowingly allowing cancer to spread by NOT advising ladies with Dense Breasts to have a test more suitable to their condition.

After my GP found my lumps (by accident, as I only went in for a Pap smear) - I had a mammogram and US on the same day.  My GP had stipulated the exact spot that identified the tumours .... 12 oclock immediately above the nipple.  The Mammogram & 'reader of the mammogram' didn't spot it at all.  The Ultrasound was inconclusive - but at least they suggested a biopsy, which found 2 tumours, one 95% cancer cells, the other 75% cancer cells.

It is actually NEGECT OF DUTY OF CARE if they DON'T advise  women with dense breast tissue to get an Ultra Sound.   Even if they had said it in their 'letter' afterwards ..... where they 'cover themselves' by saying there is no guarantee that you DON'T have cancer!  They could add it right there - that you are a woman with dense breast tissue or 'lumpy' breasts - & should have different tests to determine whether you may have cancer.

This is from a buddy who is a radiographer ..... who I queried re the Dense Breast Tissue issue when it was raised here: https://onlinenetwork.bcna.org.au/discussion/comment/139080#Comment_139080

 QUOTE  I have worked at Breastscreen and in private radiology clinics and all mammograms are independently double read by either two specialist radiologists, or a computer program plus a radiologist. 

Only certain types of breast cancer are detectable on mammogram (fortunately, it is the most common one which is detected) - mammograms look for tiny microcalcifications which are only seen in a few types of breast cancer. 

Ultrasound will also only detect certain types of breast cancer, and again MRI will only detect certain types of breast cancer. 

 Essentially, I do agree that there needs to be more awareness about the limitations of mammograms in people with dense breast tissue (the other issue is cancer is white on mammogram as is dense breast tissue white - so dense breast tissue hides it!). 

 I really don't want you to discourage people from having mammograms - they absolutely have their use, but again, have their limitations as they are only a screening test not a diagnostic test.  UNQUOTE

Good luck at the Workshop - we will expect a full report afterward!  ;)  NO PRESSURE!   ..... Is there any chance they could livestream it on Facebook?  It just needs a phone or laptop & push a button!! 

Looks very interesting @romla - unfortunately, I've got radiation right in the middle of it.  Breast density is not much of an issue for me now but it was (and who knows, perhaps things may have shown up sooner).  It will, I'm sure, be an issue for my girls who need to be screened from 30 yo.

WONDEFUL @Romla ... my question would be along the lines of .... if WA has no legal or ethical problems in advising women that they have dense breast tissue and may require Ultrasounds rather than Mammograms .... why are the other states refusing to do so?   Early detection (in the long term)  is less invasive, less stressful to the patient and family and less costly to the patient and Medicare .... so what is the problem? If not given all the facts,  an informed decision cannot be made.  We already sign an indemnity form  before the mammogram is done .... yet it is almost useless with some forms of cancer due to the dense breast tissue camoflaging the cancer.