Two things about BreastScreen NSW

NoShrinkingViolet

1.  Recent posts on the BreastScreen NSW Facebook page have criticised it for not assessing breast density, unlike BreastScreen WA and private screening clinics.  Tumours can hide in dense breasts which is a greater risk in BreastScreen's 2D screening mammograms.  Radiologists at BreastScreen WA and private clinics can recommend 3D mammograms and ultrasound to obtain clearer images in dense breasts.  Radiologists at BreastScreen NSW are not allowed to do this.

Someone asked if BreastScreen NSW had ever been sued about this.  Google "Christine O'Gorman" and "BreastScreen".  This is a link to a concise summary of the legal case:  http://classic.austlii.edu.au/au/journals/PrecedentAULA/2009/34.pdf

2.  Libby-Jane Charleston, aka LJ Charleston, is a journalist who is reporting on her recent midsadventure with BreastScreen NSW including their failing to contact her for follow-up after a problem mammogram, and the brusque conduct of the counsellor who gave her the diagnosis at a face-to-face appointment.  She is a vocal proponent of self-advocacy when dealing with the health sector. 

She has written about her experience on the websites of Nine Media, News Limited, and her Twitter account which has high-profile followers.

https://honey.nine.com.au/latest/breast-cancer-diagnosis-same-time-as-sister/757cf524-8cea-4e85-abbb-412f3fc53db8

https://www.news.com.au/lifestyle/health/health-problems/sisters-diagnosed-with-breast-cancer-just-one-hour-apart/news-story/d7150ec5a76d547f277763b45ae4121a

https://twitter.com/LJCharleston

wendy55

Hi @NoShrinkingViolet,
I do not know if you are or were aware of the Breastscreen SA debacle back in 2012/2013, when a number of women were recalled to have their mammograms re looked at I was one of these women, so late in 2012 I received a letter outlining this, I was not asked back for another screening, they just had alledgedly 3 independent radiologist loook at the mammograms, then in early 2013 I received another letter stating that I was in the clear, 5 months later I was diagnosed with stage 4 metastatic breast cancer in my left breast, liver and bones, I tried everything to make them accountable, via a laywer, twice and constatly hit a brick wall, the final insult was a doctor very well renowned and who happened to work for breastscreen sa stating that 3 independent radiologists had looked at the mammogram and deemed all was in order, work it out for your self, I now have a life shortening disease, I will eventually die from this, and all because of "human error", I wish I knew then what I know now, especially allowing a breastcreen doctor/radiologist to have the final word and then would you believe he wanted to charge me a $1.000. for the report, which I did not pay.

NoShrinkingViolet

Hi @wendy55 I am rendered speechless by your personal account.  I am aware of the SA debacle and of the recent BreastScreen QLD case of Louise Perram-Fisk (a former Cancer Council executive) that was settled out of court.  Your personal account is searing.  I am so saddened about what you have endured because of the systemic and professional failures of BreastScreen, and doctors protecting doctors.

wendy55

Hi @NonShrinkingViolet, thank you for your reply, yes, to me it was doctors protecting doctors, I did have a private radiologist from interstate who had given a verbal report very much in my favour, then she said she would not be able to go to court and testify as she was the sole carer and income earner for her family, that speaks volumes doesnt it, I was not aware of the case of the Cancer Council employee that you speak of, I also have a feeling that had we had a change of government, it was Labor at the time, we are now Liberal things may have been different, the previous health minister and the current health minister are totally different, either way it does not matter much now, I was nothing to them, just someone to be swept under the carpet, until I take my last breath I will always be aware that someome did not fess up to their mistakes and its going to cost me my life. 

Blossom1961

The medical profession will always back each other up. My Dad died of bowel cancer due to a doctor stuff up but we were told not to bother trying to bring them to account because we would lose our home over it. Dad's files were missing for two weeks between the time we requested them and the time we received them. 

arpie

I've had numerous run-ins with BSNSW, in writing - since my own breast cancer was not picked up by the rural buses with 2D machines .... but my GP easily found it 4 months after in a random breast check.   

BSNSW asked if I wanted my films 're-examined' by an independent radiologist & also compared to the ones done at a proper radiologist place.  I said yes.  They then sent me a gleeful letter saying that in their opinion, I didn't have breast cancer.   WRONG ANSWER!  1) they didn't use an independent radiologist to read it & 2) they didn't compare it to the other films.

They got yet another blast from me in writing about the insensitivity of their letter and that it is medical neglect by omission to NOT advise women of their breast density on their very first mammogram & the need for an ultrasound (as a minimum) if found to be the case.

It is illogical that BSWA can tell their clients but BSNSW (or the other states) can't - as they are all under the BS Australia umbrella.

@wendy55 - I am so sorry to hear of your battle with them & it is disgusting that the doctors all protect each other .... xx

@Blossom1961 - I am so sorry to hear of your Dad's malpractise as well.  xx

It costs them NOTHING to advise patients of their breast density - it is their JOB to find the breast cancers as early as they can, and by not advising clients of their basic rights - are contributing to higher mortality rates.

NoShrinkingViolet

@arpie Well said.  Your lousy experience is another indictment against the BreastScreen program, with the exception being WA's superior service.

NoShrinkingViolet

It is my understanding the majority of radiologists who read 2D screening
mammograms for BreastScreen Australia work in private facilities.  To maintain their Medicare-billing privileges
and public hospital access they have to ‘do time’ in the public system, hence
they participate in BreastScreen Australia. 

This means if Radiologist A reads your 2D screening mammogram at their
private facility, and dense breast tissue is impeding their reading, they will
assess breast density and recommend a 3D mammogram and/or ultrasound to obtain better images. 

But if Radiologist A reads your 2D screening mammogram at any state or
territory BreastScreen facility (except BreastScreen WA) and dense tissue is
impeding their reading, they can’t say anything.  BreastScreen Australia has bought their silence. 

The radiologists are placed in a compromising position because
BreastScreen Australia (with the exception of the innovative, cutting-edge
BreastScreen WA) requires them to practise at a standard lower than their private
facilities.

A detection of breast cancer that is delayed because of low-quality images increases the risk of a woman enduring more aggressive treatment and a worse prognosis.

Zoffiel

Breast Screen, in general, is a fabulous idea which has probably saved countless lives but the funding models behind it are flawed.
I've been fighting for years to have their referral models for regional and remote patients overhauled. Long story short, they still refuse to inform call back screens to the closest facility. I still have conversations with women and men who are told that their follow up screen (if any abnormality has been detected) has to be conducted at a Breast Screen facility. That results in stress ridden and completely unnecessary trips to Melbourne when they could just go in to their local facility for a screen. It's all about the money and it sucks. Mxx

Sister

It's awful to read these comments knowing that there are people who are suffering needlessly.  I count myself one of the fortunate ones as without the skill of the radiologist at Breastscreen SA who picked up a very hard to see anomaly, I would be in a very different situation now as I had a fairly fast-growing cancer without any symptoms.  That said, because they neglected to send my original scans to the private pathology clinic, my first year scan was absolutely traumatic.  

arpie

Here is the account of my run in with BSNSW, following my missed cancer in their mammogram buses in Regional NSW.  The bus is here again, as I type .... probably still not advising women of their breast density and still using inefficient 2D machines  

it is a bit of a read, but has lots of valuable information from many of our members.  

I never did hear back from them about comparing ‘their’ films with the radiology films and ultrasound - so can only assume they didn’t do it!

https://onlinenetwork.bcna.org.au/discussion/20505/so-i-received-a-breastscreen-nsw-reminder-for-my-2-yearly-mammogram/p1

Maryn

I can’t speak highly enough about the exceptional service I received from Breast Screen SA.
For me they were efficient, kind and thorough- this included all staff present when I had my scans, biopsy,
and diagnosis.
Short of sounding dramatic they had a pivotal role in saving my life ☺️

arpie

That’s awesome, @Maryn .... I am so pleased that your experience with them was a good one, as are many people's.

I reckon 80%+ of people attending Breast Screen Scanning in Australia have had exceptional service and outcomes, which is just terrific.  Sadly, it is the 20% that they are ignoring and deliberately misleading, that may go on to have an adverse diagnoses .. and may even pay with their life.

But when they knowingly withhold vital diagnosis information from their client, putting their lives at risk, the gloves come off!

It is no skin off their nose to advise women of their Breast Density, maybe even giving them a piece of paper with correct options for them to consider - if the patient doesn't follow thru on it, so be it ...BUT ..... it is both morally and ethically wrong NOT to advise them that they have an adverse risk that they are totally unaware of!  

The really sad thing is that most of the women with dense breast tissue (if you look at the films, it shows white around the whole front area of breast including the nipple area) - and that is where Invasive Lobular Cancer is usually found. Invasive (ie aggressive) Lobular Cancer does not present as a 'lump' as such as Ductal and other BCs do - it can also present as 'strands' (not unlike that TV Advert showing the cancer with legs infiltrating everywhere .....) It is always one of the more difficult to diagnose both manually and by mammogram. 

Personally - I will never be trusting a rural bus Breast Screening again .... 

NoShrinkingViolet

@arpie I agree it is morally and ethically wrong that BreastScreen NSW conceals vital health information from women.  It is dereliction of duty, by both BreastScreen NSW and the reading radiologists.
  
The radiologists compromise themselves by agreeing to read scans at a standard that is inferior to BreastScreen WA, private clinics in Australia, and screening programs in overseas jurisdictions.  Thirty-seven (37) states in the USA have legislated that women must be informed of their mammographic breast density, with other modalities recommended to obtain higher quality images of dense breasts. https://densebreast-info.org/

Dense breasts are common in women under 50 (about 50%), but 40% of women in their 50s have dense breasts and  25% of women in their 60s.  BreastScreen NSW actively promotes screening from age 50 and 40% of their 50-60 year-old clients will have dense breasts.  This is a sizeable subset of clients with dense breasts whom BreastScreen NSW is failing by not deploying the modalities that can generate better images and detect cancer at earlier stages.  Their clients are unaware of the risks this poses to their health, prognosis, and treatment regimens when a detection is delayed because BreastScreen NSW 'doesn't do dense breasts' (as I was told by a staff member).

BreastScreen NSW's current marketing campaign includes the claim their 2D mammograms 'can find cancers as small as a grain of rice'.  It is unrealistic that a tumour as small as a grain of rice would be detected in a dense breast under BreastScreen NSW's current substandard reading policies.  The claim is misleading and creates a false sense of security.