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

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  • arpie
    arpie Member Posts: 7,733
    edited March 2019
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    Some of the items we covered in the discussion this morning on the phone, relative to my letter to them ..... (my comments are in 'Italics' )

    ·         Invasive lobular breast cancer is often occult on mammography & therefore more difficult to diagnose (i.e. white on white so not readily visible on the MG)

    ·         There is an increased risk of lobular breast cancer occurring in the contra-lateral beast (i.e. other breast - something to be aware of!  Not sure I'd been advised of that previously!)

    ·         Breast density has been discussed by BreatScreen NSW and no decision as yet  has been made regarding   disclosure to women as there are is no current evidence based guidelines as to what is recommended with different percentages of density (She basically said they couldn't decide 'which density of breasts' should be advised of getting an ultrasound - not wanting to scare women unnecessarily or give them additional expenses - which I thought was pretty stupid ...... Obviously those with the most dense breast tissue should be advised to have an ultrasound or other scans -  as the cost of an ultrasound is way cheaper than the surgery & all our other expenses experienced since diagnosis!)  In my opinion, those with mid - lesser dense breast tissue should also be cautioned that their condition may compromise their MG results and give false confidence in being clear!)

    ·         With symptoms related to taking an aromatase inhibitor (eg Examestane) Glucosamine has been found to help aches & pains

    ·         For hand weakness, possibly seeing an occupational therapist who specialises in hands would be helpful

  • MvB
    MvB Member Posts: 35
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    @arpie you are my new idol!  Somewhat weirdly I also received a breezy letter last week from BreastScreen advising me I could access their services at a few locations.  As an 18 year "survivor/reviver" currently dealing with #4 early-stage BC (again!) I think I only ever received one letter when I turned 50 (5 years back).  They asked in their recent letter to advise if I didn't want to receive any further notifications.  I told them I was already well looked after.  Sounds like they must have had a funding boost to get more women to do this...and that is a GREAT thing!  And unfortunately maybe some of us who are earlier starters on "the road" get caught up.  Would be great if all the data-bases lined up.  But they don't.  So we have to just take these missives from the universe as a sign that there is a lot of good, but not perfect, work going on.
  • arpie
    arpie Member Posts: 7,733
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    Thanks, @MvB  - So 5 years ago - did you actually have a MammoGram thru Breast Screen?   Yes - the ducks all need to be lined up to have an effective screening history - from which they get their 'percentages'!

    I am guessing that a lot of women may just toss the letter once they've been  diagnosed (specially if they have been screened with BS in recent years) as it either upsets them or pisses them off ..... which is a real shame, as there is then no record of what is happening with those women after that 'dodgy' MG. I happily went along for 15 years, every 2 years ... with 'clear' results, including the one 6 months prior to my own detection (accidentally by my GP when I went for a pap smear - she said 'I'll check your boobs at the same time!'   Thank God she did!!

    So hopefully this post will encourage women to actually contact BS when they get their reminder & have the review done on their 'most recent' BS film vs their diagnosis films, to see if they CAN see the tumour that they 'missed' and whether it was dense breast tissue that contributed to it.

    Take care, wishing you all the best with your treatment xx
  • MvB
    MvB Member Posts: 35
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    Hi @Arpie, no I never did BreastScreen because I asked for a mammogram in my early 30's that wouldn't have been covered by BreastScreen and which started my current journey (hate the word journey! :smile:).  But I have had very few letters from them which makes me think this is part of a new "push" - which is good overall, if not a bit frustrating for those of us already diagnosed. 
  • kmakm
    kmakm Member Posts: 7,974
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    @arpie @MvB Maybe My Health Record will help with the data base link up. For those who haven't opted out of course.
  • MvB
    MvB Member Posts: 35
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    Yes!  I saw all the talk about the pros and cons on "My Health Record" and thought...happy for everyone to know...hopefully the dots can be connected.
  • kmakm
    kmakm Member Posts: 7,974
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    Me too @MvB. I stayed in. I thought it would be useful in the years to come if my doctors for whatever issue could see, say, that I had a big problem with low BP during my BC treatment. It will be interesting to see how it plays out.
  • MvB
    MvB Member Posts: 35
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    Yes, apparently we need to worry that all our info will get hacked.  I'm a bit like..."hack away...enjoy"!
  • kmakm
    kmakm Member Posts: 7,974
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    @MvB Same!
  • JJ70
    JJ70 Member Posts: 983
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    Love your letter @arpie. In WA, if you are diagnosed with BC (via BreastSceen that is) you are invited for ANNUAL mammos, one year after diagnosis. Gotta love BSWA - they are on to it. One thing they need to straighten out though - and I am not sure how with patient confidentiality - is the recall of women who have had DMX. My friend got recalled a year alter her diagnosis and she had no boobies left to screen. She was a bit upset by that. I am part of BSWA's Consumer reference Group and brought it to their attention, but don't think a solution was found. I was thinking along the lines of the breast care nurses in hospitas having a BreastScreen form for patients to sign, declaring their DMX and to be removed from recall list.
  • Flaneuse
    Flaneuse Member Posts: 899
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    @JJ70 Good idea. You're doing an amazing job in that field. 
  • arpie
    arpie Member Posts: 7,733
    edited March 2019
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    Well done @JJ70 .... I’m just suggesting the same thing to Breastscreen nsw ..... with a self addresssed envelope included with the requests and a tear off bit saying “not required any more due to .......”

    We differ from  BSWA, in that once diagnosed, we no longer qualify for Breastscreen mammograms - they must be done outside the organisation.

    I am am currently replying/writing to the nurse counsellor regarding my own views re being advised of DBT (Dense Breast Tissue) As it has become a bit of a hobby horse for me now. ;) By not advising us, it is actually a form of malpractice by non disclosure!

    I have literally just received the official letter requesting access to all my ultrasound/mammograms/biopsy and reports from all, including my pathology .... so that they can mount their own investigation into how/why it was not picked up by Breastscreen NSW Hunter New England!  I think we know why ....

    1.  I have dense breast tissue
     2. I don’t believe the buses are equipped with the latest 3D Tomosynthesis machines which are 40% more sensitive than the digital mammograms and more likely to pick up more tumours.
    What is Breast Tomosynthesis?

    Tomosynthesis is a revolutionary technology that gives radiologists the ability to identify and characterize individual breast structures without the confusion of overlapping tissue. During a tomosynthesis scan, multiple images of the breast are taken at various angles. These images produce a three dimensional reconstruction of the breast that the radiologist can scroll through in one-millimeter thick “slices.” Reviewing breast tissue slice by slice removes the confusion of superimposed tissue found in traditional two dimensional mammography, allowing for more accurate diagnosis.


  • JJ70
    JJ70 Member Posts: 983
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    Hi @arpie.
    Investigate, but I think you may find that after 5 years, you can indeex return to Breastscreen if you so desire. From my understanding, this is the case for NSW, VIC and QLD .
    No van or normal centre has 3D Tomo. Only assessment centres for recalled individuals.  3D Tomo is indeed better. It is fairly new and $$$$. Not only the hardware, but the reading of the images. Each slice of the image has to be read, rather than a single image.
  • JJ70
    JJ70 Member Posts: 983
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    I totally agree about the DBT notification. It must become a national policy. 'Malpractice by non-disclosure' - I love it. May I steal it for Can at 40. Do at 45?  Mandatory reporting of DBT has recently become law in many US states.
  • arpie
    arpie Member Posts: 7,733
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    Absolutely, @JJ70 - pinch any bits you want & spread the word!!!  

    I seriously believe that their non-disclosure of DBT - is costing lives!!  Just ask anyone here who is diagnosed straight up with Stage 4 - who have DBT - they could have been caught earlier!   :(   It is identifiable with 'other scans', earlier & still totally 'treatable' rather than being a terminal disease!   :(  

    Yes, after 5 years, apparently in NSW, we 'can' revert to normal Breastscreens - but I won't be trusting it, for one!!  If they haven't picked up on the first one, how could they possibly pick up on the 2nd one?   :(  

    In the long term, it is a total waste of money to misdiagnose BC in the first place - as it costs more to the Gov/Medicare/Funds than if diagnosed early & treated early - let alone the mental anguish for the patient, the family & friends. 

    It is just NOT ON!

    I am assuming I will be told the 'results' of their 'investigation' to my Breastscreen films vs my 'non certain' Mid North Coast Diagnostics US & MG, who then suggested a Biopsy ....... which found my tumours!  

    Thank GOD for my GP!!