Forum Discussion
(in the quotes below, Interval breast cancer is a term given to cancers detected or presenting within 12 months after a mammographic screening in which findings are considered normal.)
My letter to them:
I received my 'images review' from BreastScreen NSW a while back now - and I must say that I was disappointed in the way that it was presented to me.
I understood that the follow up mammogram and ultrasounds with **** Diagnostics (after the lump was discovered but before surgery) were to be reviewed as well, not just the original BreastScreen NSW Mammogram - as I was requested to give permission for those to be accessed from **** Diagnostics. (Otherwise there was no need to give permission, as BSNSW had their own original mammogram films on file.) There was no mention of them in this 'review'. Without the comparison - just checking the BreastScreen NSW image on its own is pretty well useless.
The way in which the letter is written is very poor - it is the most impersonal letter that I have ever received, since the lump was found in Nov 2017.
It is obviously a form letter - and I would be surprised if others receiving the letter weren't upset by the way it is written/presented - nor would they recommend their friends to have their own images reviewed by BreastScreen NSW, post diagnosis/surgery/chemo/radiation because of it.
That letter could have been worded SO much better! There is no empathy for the fact that I WAS diagnosed with cancer (even tho it almost gleefully tells me that I don't/didn't have cancer in the first place.)
The facts are - I DID have breast cancer & required surgery & radiation & currently on 5-10 years of hormone suppressing tablets - but due to my dense breast tissue, BSNSW missed it.
To be honest, I would have thought a slight apology might be in order too - even tho I know that when having the mammogram, everyone is told that it may not be an accurate result! Coming from a 100% Non Cancer family background - being diagnosed 4 months after my BreastScreen NSW mammogram was a total slap in the face - I was staring my own mortality down!
Then finding out that I have Dense Breast Tissue and the fact that BSNSW COULD HAVE TOLD ME 15 years ago - is disgraceful - as it is medical neglect by omission & can lead to women not being diagnosed until they are stage 4 and terminal, particularly if they are in their 40s and not actively advised that they CAN access the free mammograms already.
I would like to know the statistics of all the reviews that HAVE been done to date - to see how many 'post diagnosis' show as being positive for cancer in the review (after being shown as negative at the point of initial screening?) Or are they all 'no cancer' like mine, as with original findings.
Hiding the fact that women can have free mammograms from age 40 AND over 75 is ALSO medical neglect by omission - yet all the BreastScreen adverts on TV and social media continues to advertise saying that only those from age 50 to 75 can attend free mammograms. This is an outright LIE! It is also disgraceful - as over 20% of those with Breast Cancer are those younger women in their 40s - some on their first mammogram at 50, when the disease is already fully established and many die from it each year. I'd be interested in THOSE statistics, too.
Whilst the letter indicates that I can speak with ***** regarding the results - I am not sure that will achieve anything, as she would only confirm the findings that their radiologists missed both times - in the initial review & now this one - most likely because of my dense breast tissue.
So .... according to the 'review' I don't/didn't have Breast Cancer at all - which just proves that the Mammogram in the bus isn't 'up to grade' on picking up all breast cancers, particularly where dense breast tissue is concerned. This highlights my previous comments in my initial letter, that women NEED TO BE TOLD that they have dense breast tissue - to give them the opportunity of having either an ultrasound done or other scans done. They NEED to be given that choice. I was lucky my GP found mine 'by accident' - otherwise it would still be growing bigger, as I type - and unlikely to be picked up by mammogram until it was Stage 3 or more likely, Stage 4.
I would like to know what the 'model' is of the Mammogram machine in the buses? Is it 2D or is it the newer 3D Tomosynthesis? Whilst the 3D Tomosynthesis picks up many more tumours, it is still not foolproof on dense breast tissue - and we all know that ultrasounds will often pick up abnormalities that the Mammograms don't.
Out of interest - do you know if YOU have dense breast tissue? If you do know - would you be relying purely on only a mammogram as a diagnostic tool? I don't think so. Would you be happy to use the Mammogram machine on the bus as your diagnostic tool? I don't think so. Because we are 'rural' and do not have a dedicated Mammogram machine in our town - we are once again being given what I believe to be a substandard service. We already pay thru the nose as our Health Funds only pay for 'specific surgeons in specific hospitals' in major town centres and we don't have the same choices that those in big towns/cities do ....... so we also often have huge 'gap fees' - I am well over $6000 at this point from my surgery and treatments.
I would recommend that both you and ***** read this article (and everyone else in BreastScreen NSW):
Particularly THIS bit!
QUOTE: (Overall, the sensitivity of mammography for the detection of breast cancer is 85%; however, in women with dense breast tissue, the sensitivity of mammography is reduced to 47.8–64.4% [6]. Not only is mammography less sensitive in women with dense breasts, women with extremely dense breasts have a 4.7-fold increased risk of developing breast cancer [7]. Therefore, women with dense breasts have a higher risk of breast cancer, yet mammography is less effective. Cancers detected in women with dense breasts are larger and more often node positive [8]. Interval cancers, which have a worse prognosis than screen-detected cancers, are 18 times more likely to occur in women with dense breasts [7]. This is even more significant since more than half of American women have dense breast tissue [9]. Given the prevalence of dense breast tissue and the challenges of identifying cancer in dense breasts with mammography, additional imaging modalities to detect mammographically occult breast cancer are needed.
As of January 2018 in the United States, 30 states have “density notification” laws requiring women to be informed of their breast density, many mandating that women be informed that additional screening can detect cancer not visible with mammography [10]. The issue of dense breast tissue and its impact on both breast cancer risk and mammographic limitation is increasingly being featured in the lay press and media. The concept of individualized, risk-based screening is increasingly taking hold.
At present, there is a risk-stratified screening model in place in the United States. Mammography is the mainstay of screening for women aged 40 and over. High-risk populations (women with a lifetime risk of greater than 20–25%) are advised to undergo additional annual surveillance with magnetic resonance imaging (MRI) [11,12,13] or if they cannot undergo MRI, the ACR now recommends they should consider screening breast ultrasound (SBU) [14]. However, there is a gap in the approach to screening intermediate risk women (women with a lifetime risk of 15–20%), who may not qualify for high risk screening with MRI. Women with dense breasts constitute the largest portion of this intermediate group and stand to benefit from early detection using adjunct screening approaches in addition to screening mammography.
Dense breast tissue appears white on mammograms, as does breast cancer, which is why dense tissue can sometimes obscure a cancer. In contrast, dense tissue is echogenic on ultrasound, while breast cancer is hypoechoic. Ultrasound leverages the differences in tissue characteristics to improve cancer detection in women with dense breasts (Figure 2).) UNQUOTE
My hope is that Breast Screen NSW will take this letter seriously - and change the 'Can See, won't tell' attitude regarding Dense Breast Tissue, and that BSNSW WILL start advising women that they can have free breast scans from age 40. What may appear to be 'added expense' to the Gov at this point in time is minimal when compared to the cost (Medicare etc) of more invasive surgery, chemo, radiation & even DEATH, through not being diagnosed early enough.
And their initial reply ......
Thank you for taking the time to contact us. I apologise that this has occurred and especially apologise for the poor drafting of the letter you received. Reading it in hindsight after reading your email very much highlighted the shortcomings of the letter to me.
You will receive something in writing from the service addressing this and other issues in your email, I have tried to call you today to discuss your concerns on the phone numbers we have in our record keeping system but was unable to get through.
We will also forward your comments and concerns about breast density on to BreastScreen NSW.
Please let me know at any stage before or after receiving the written response if you would like to speak with me or attend in person to discuss your concerns/ review your films with our Senior Radiologist.
Kind regards
****
**** | Clinical Director | Breast Physician BreastScreen NSW
Needless to say - It will be very interesting to see what they say next!!
If you have been unhappy with any part of your own screening - make sure you tell them!! Feel free to raise any of the points I have mentioned above & earlier in the thread