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

arpiearpie Mid North Coast, NSWMember Posts: 2,939
edited February 25 in General discussion
Who else has received their Mammogram Reminder after being diagnosed & treated?

Last week, I was a bit surprised to receive a reminder to have my 2 yearly mammogram as I thought there might be some sort of communication between the various health professionals & the organisation .... then again - why WOULD they know about my ILC BC?

So far, I've received a written letter, an email & an SMS to my mobile phone - so they are really keen to get me back!!

I thought a letter explaining why I wouldn't be going back would be in order.   This is what I wrote. I'll let you know if I get a reply!!

Hi guys, 


I’ve received my reminder for a mammogram, but I was diagnosed with invasive lobular cancer 6 months after my previous mammogram, which wasn’t picked up by it. 

There is no breast cancer (or any cancer) in my family, so this was (and still is) a real shock to me. I’ve had surgery (Jan 2018) and also radiation and am now on hormone tablets for the next 5 years+.

Apparently I have dense breast tissue, but I wasn’t advised of this by Breastscreen NSW and that it would be beneficial to have an ultrasound for earlier and better detection rates.  

Breast Screen Western Australia advises their clients with dense breast tissue to do this. 

It is time for Breastscreen NSW to do the same.

I will be having yearly mammograms and ultrasounds as a part of my ongoing breast cancer management, so would request that you remove my name from your reminder lists. 

I only hope that I am not one of the 30% who then randomly go on to develop metastasised/Stage 4 breast cancer, irrelevant of the ‘good outcome’ of my surgery, Rads and tabs. It really is a lottery. 

Much more research is needed in this area, to determine WHO will get Stage 4 and WHY? Tissue and bloods should be taken from all having surgery, to provide material for researchers to work with!

I would be interested if a radiographer could take a closer look at my last mammograms with Breastscreen NSW in 2017 ... to see if, in hindsight, anything could be detected on them, now that we know it was there all along? It was in my right breast. 



What do you reckon?  Not too rude??
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Comments

  • AfraserAfraser MelbourneMember Posts: 2,422
    I got mammogram reminders until I asked them to stop (as I am still having yearly mammograms with my surgeon, whose mammogram equipment is superior). I also suggested that asking why someone has not had their mammogram might be useful. If I had a bit more faith, this is one of the things that integrated health records could work on - percentage of positive diagnoses within 12 months of a mammogram, percentages of those without a check in more than three years etc etc. All I got when I spoke to Breastscreen to say I had been diagnosed and was having regular mammograms elsewhere was a fairly churlish 'so you want to be taken off our books, then?'. The answer was in the affirmative. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,630
    I was diagnosed at Breastscreen and haven't received paperwork since - 4 years in April - must say I would not be happy if I did!
    I guess a system is only as good as it's operators and it is a shame that their system is not so diligent - slack!
    They obviously don't realise how upsetting getting a letter like that can be when you are in the middle of treatment and or acceptance.  
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,242
    I never get reminders for my mammogram and I have been having them for fifteen years. I do however get my two yearly reminder for my colonoscopy every time.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,939
    I'l;l be very interested to see if I get a reply!!

    Thanks @Aggie - I may as well ask for copies of my previous mammograms, 'for the record'!!

  • FlaneuseFlaneuse BrisbaneMember Posts: 851
    @arpie I think your letter is superb.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,813
    Breast Screen is a great program over all but it has its problems. Here the main issue has been refusing to refer call backs to the local health service and persisting in requesting women travel to Maroondah for follow up scans. That's motivated purely by finances and funding which Ive long found to be the shabby side of the process.
    Like many federal and state govt funded initiatives, they rely on numbers to keep the bucks coming in. Those of us who end up with a lobular diagnosis know how unreliable a mammogram can be, but I guess if it saves a few lives it's worth the irritation of having them nag for more business. If you unsubscribe you should find you are left alone, but it's curious that some people get no reminders at all.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,939
    It is still very sad (dare I call it negligent!?) that those with dense breast tissue are not advised to have further screening.  

    It is not a difficult thing to do.  :(    It would take 10 seconds of time.  They have to check the screens that the images are OK - so they know then & there.

    If we can bring about this change alone - it will be good
  • tigerbethtigerbeth MelbourneMember Posts: 528
    Yep I've had 2 reminders from Breastscreen ! The first one caught me offguard & I was upset !
    2nd one I threw in the bin !! No communication obviously even though I asked them to send my previous films to MIA for comparison ! They even sent me a bill for sending them , I didn't pay it !!
  • FlaneuseFlaneuse BrisbaneMember Posts: 851
    @tigerbeth The HIDE of sending you a bill!
  • kmakmkmakm MelbourneMember Posts: 7,447
    Good on you @tigerbeth.
  • tigerbethtigerbeth MelbourneMember Posts: 528
    @Flaneuse I know I was shocked when I was sent the bill , even more so as where they had to go to was probably a 3 minute walk away !! 
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 756
    It really is upsetting.  Around 6 months after my mastectomy in August 2016 I received a letter from Breastscreen Queensland acknowledging that I had been diagnosed with bc and wishing me all the best.  They also said that I would not be eligible for free Breastscreen visits for 5 years as I would be under the care of a specialist.  My cancer was picked up in a routine Breastscreen mammogram and I had a pelvic ultrasound at QScan (in the same shopping centre as Breastscreen) two months after my surgery. The radiologist remembered my name and mentioned that someone from Breastscreen had visited them with my mammogram for a second opinion, “is it, or isn’t it?”.  They were a bit iffy too so recommended a recall just to be on the safe side.  It could have been a completely different story when I had my next mammogram 2 years later if they hadn’t!
    However, I did get a Pap smear reminder 3 months after a full hysterectomy last May and was very happy to call them as have my name taken off the register 😊
    You would think the surgeons would pass these details on?   Jane
  • arpiearpie Mid North Coast, NSWMember Posts: 2,939
    That’s a shocker @Hopes_and_Dreams!  On both counts!  just as well they asked for a 2nd opinion!

     Glad you didn’t pay the bill @tigerbeth
  • SisterSister Adelaide Hills, SAMember Posts: 4,257
    I think the letter is great @arpie.  The density issue is ridiculous but then so is sealing films and reports for doctor's eyes only.  We're women (and men) - not children.  We have a right to know what is going on in our bodies.

    Unfortunately, Breastscreen is staffed by the good, the bad and the bumbling.  I will be forever grateful that the woman who scanned me 14 months ago, saw a very, very slight indicator that something wasn't right.  As @zoffiel says, lobular is very hard to detect.  Another 12 months would probably have been a completely different story for me.
  • FlaneuseFlaneuse BrisbaneMember Posts: 851
    @Sister Yes, you were very fortunate. I'd had a regular Breastscreen mammogram (no evidence of cancer) nine months before I noticed my nipple receding and then a slight distortion in my left breast. GP got me an appt the next day at Wesley Breast Clinic - mammo & tomosynthesis showed nothing. On ultrasound it was barely perceptible. 15 biopsies. Report suggested 8-9 cm IVC. It ended up being 12 cm. So my daughter, nieces and anyone else I can influence have ultrasounds as well as mammos now. Mine had probably been there for years. It was certainly there before the Breastscreen mammo because in the second half of that year, I'd often had a sixth sense that something was not right in my body. Not unwell; but just not right. Then when I got the clear Breastscreen result, I thought, oh well it wasn't that, anyway. Wrong.
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