So ... I received a Breastscreen NSW reminder for my 2 yearly mammogram!

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  • arpie
    arpie Member Posts: 7,739
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    Last week, I sent a carefully worded letter to BSNSW over my disappointment in their review process & lack of empathy & my disgust that they are still not advising women of their Breast Density or the fact that women 40-49 and 75+ CAN have free Mammographies .......

    (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

  • arpie
    arpie Member Posts: 7,739
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    @JJ70 - VERY INTERESTING ..... BSNSW advertises for Aboriginal women to have free screening from age 40 - but not Caucasian women.

    This could be called racism  :( 

    Calling local Aboriginal ladies, join us for a free yarning circle at The Little Theatre in Parkes on Tuesday 11th June at 11am. If you are 40+ you can have a free breast screen on the day if you wish. Free refreshments and goodie bags provided.

  • JJ70
    JJ70 Member Posts: 983
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    @arpie this difference for Indigenous women is three-fold in reasoning:
    1) BreastScreen Aus needs to see a certain quota of Aboriginal women. They need data on the indigenous...so they gather clientele from wider parameters.
    2) Indigenous women have one of the lowest % participation rates across the country, so getting in to screen earlier will help rates increase.
    3) It is pretty much unheard of for Aboriginal women to have dense breast tissue - genetics. They are better candidates for successful mammography images.

    Having said all that, your point is valid. Call them on it.
    BSWA have a big banner for Indigenous from 40...printed years ago. Similar banners for general population say 50...


  • Blondy
    Blondy Member Posts: 238
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    @arpie, yes a good letter. Mine have always been dense and my 2 yearly reminder came the day before my surgery. In a way, if I hadn't of known I already had Bc it would have been picked up for sure. When I rang and told them why I would not be going, the lady sounded like that's all she ever hears. If it was me I would have at least said something positive for the coming surgery, but no. I'll be due in November for my reminder. We'll see. My surgeon requested my last mammogram from breast screen. Also breasts screen rang me and said that they'd be looking at my last ones too to see if anything was visible 2 years prior. It's still a good thing to have the luxury of breastscreen. 
  • arpie
    arpie Member Posts: 7,739
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    @Blondy -  Did Breast Screen get back to you after the review of your Mammogram with their 'new results? 

    That is interesting that the woman didn't seem surprised that you had been diagnosed, following your clear Mammogram.  That would indicate it was not a 'one off'!   And once again, no empathy.

    You shouldn't receive another reminder in Nov - as your surgeon/Onc will be doing your referrals for Mammogram/ultrasound for some years to come now.

    Yes, Mammograms still have a place for 80% of women ..... just not suitable or reliable for those with dense breast tissue, who already have a higher incidence of Tumours.  I have mine (mammogram and ultrasound) done thru a reputable Diagnostic Imaging Centre

  • Blondy
    Blondy Member Posts: 238
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    I haven't heard back from Breast screen @rpie , but then again I wasn't expecting too. 
  • arpie
    arpie Member Posts: 7,739
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    If they were reviewing your scans they should have told you the result of the '2nd' review!!  Probably, like mine - they'd tell you that you didn't have breast cancer!  :( 
  • Queendonut
    Queendonut Member Posts: 20
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    I had an excellent experience with breastscreen and early diagnosis but an awful time with their ‘nurse counsellor’ Who basically said that I had no right to be thinking of a full matectomy and the surgeon should not have offered it as it was obvious I would only need a lumpectomy. She then refused to measure me for the post surgery bra saying they didn’t have them big enough for me (i was a size 16 F before surgery). She then ordered me a ridiculous size 20 E.  She also told me (whilst looking me up and down) that there were better ways to prevent cancer coming back and I would do well to lose some weight. I left there non-verbal and could not speak to my husband for the 2 hour drive home. I then came inside went to bed and just cried for hours. Out of the blue a local breast care nurse called me to check in as she had just gotten a referral about me- my saviour! Gave me accurate info and direction. 
  • kmakm
    kmakm Member Posts: 7,974
    edited July 2019
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    @Queendonut I am speechless...  :o That woman clearly should not be doing that job. Gobsmackingly appalling.  :#
  • Queendonut
    Queendonut Member Posts: 20
    edited July 2019
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    Yes- i told my surgeon of the experience (not a breastscreen surgeon) and he recommended i report her. Did not have the strength or mental capacity to do so at the time. I know he spoke to the practice manager. Even today her words ring in my head- ‘reconstruction are not breasts-just lumps under the skin’. Her tactics were ruthless and very damaging. I think tomorrow i may make a phone call and see if she is still working there. Time to act now i am stronger if she has not been repromanded already. 
  • kmakm
    kmakm Member Posts: 7,974
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    @Queendonut Good idea. If that is her standard way of treating newly diagnosed women she needs to be stopped from causing any more hurt and suffering.
  • Patti J
    Patti J Member, Dragonfly Posts: 589
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    @Queendonut. Years ago, just after having my mastectomy, the female owner of the local bra and prosthesis shop asked me if I thought I  really needed a prosthesis my remaining breast was so small. My breast surgeon was horrified.
    I do not know where some of these women learn their customer service skills.
    Thankfully I have never used BreastScreen. I have never had a free mammogram.
  • Blondy
    Blondy Member Posts: 238
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    @PattiJ. I've used breastscreen for as long as I can remember. I was diagnosed after finding my own lump just short of my 2 yearly screen. If I hadn't of found it or ignored it, it would have been picked up for sure What a horrid experience for you to have at the bra shop. I've gone to Debras in Sydney for many years and after my surgery they couldn't have been more caring. @ queendonut, it makes one wonder if these heartless people choose to work in a profession where they have access to the vulnerable so as to inflict the most pain. Verbally or otherwise. If you let it affect you still, then she has done her job. I hope you can rid yourself of letting it still affect you as it's not good for your well-being and at this stage you are number one, it's all about getting you better, mentally as well as physically. 
  • Zoffiel
    Zoffiel Member Posts: 3,374
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    Off with her head @Queendonut .

    She's probably been pulling similar shit on people for ages, relying on her victims to be too shellshocked to call her out.

    I know it can be exhausting, stressful and upsetting to make complaints, but her behaviour was disrespectful bordering on abusive. You wouldn't take that from someone behind a supermarket checkout, don't put up with it from her either.  Mxx
  • Queendonut
    Queendonut Member Posts: 20
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    Am definitely looking into making a formal complaint today- even if she is not still there. Breastscreen also need to be aware and accountable for their staff!