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

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  • arpie
    arpie Member Posts: 7,733
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    Wow - you were lucky yours was found, @Sister due to that one diligent operator.   I can 'sort of' see why they don't put the reports in with the films (I can remember back when they used to!)  Some would go into shock then & there or worse.

    That's a real shocker, @Flaneuse ... 15 Biopsies??  Bloody Hell!   it is a no brainer that you should be told if the test they are using doesn't work on you .... DUH!

    Maybe we should do a poll on how many BCs (ILC in particular) have picked up by BS vs not? 
  • Flaneuse
    Flaneuse Member Posts: 899
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    @arpie The WBC doctor told me that 20% of bcs are IVC. 12 of the 15 biopsies were in my left breast - needle biopsies to try to pick up bits of the "web". I got used to the nail-gun sound every time she clicked the needle. My left breast was like a pin-cushion. The WBC people were wonderful: very thorough. They do their best to make sure that when you walk out at the end of the day (8.5 hours for me) you have your results. The histology report on the biopsies comes the next day, but the doctor and radiologist have already made their judgment on what the issue is and talked you through.
  • arpie
    arpie Member Posts: 7,733
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    All good.  

    Dr French was really happy at how good my boob was 12 months after surgery & rads - most impressed with my Rad Onc!!    Apparently the radiation really can change the entire 'feel' of the breast tissue - He was amazed there was no external rads scarring or internal thickening of tissue also from the rads.  He thought BC Boob felt quite natural and (even tho he did the surgery) was also impressed wth my 'lack of' scarring around the nipple where it had been 'relocated' after surgery.  

    He is fully understanding my anguish over my hand/thumb pain in particular - and for the 1% reduction in recurrence - agrees that quality of life is SO important.  He said about 30% of women he sees has the 'worse side effects' - whilst some get none.   

    He said that in 'my case' for a 1% reduction in recurrence - he would have to see 100 women for just the 1 to be unlucky enough to have a recurrence - a total lottery - so is it worth it to be miserable for 5 years?  If I had a higher grade tumour & it had been found in my nodes - it would be a totally different story & he would try to convince me to stay on it ....  SO .. I will put it  past my Medical Onc to maybe try Tamoxifen when I see her next - so that I know I have tried a real mix of drugs (and it is the longest running hormone drug out there!)   If I then give that another 6 months .... we'll see how i go from there.  So I will possibly be trading incredibly sore hands/thumbs for more hot flushes (roughly) .... tho who knows - I may just tolerate it better than the AIs, so worth a try.

    He will also be contacting Breastscreen to request my last film, taken 6 months before I was diagnosed - and check to see if he could detect the tumour in it.  Cos they obviously didn't know that I had been diagnosed - and if they aren't advised of their 'rejects'  (like me, where my GP found the tumour) - they only have their own '100% detection rate' showing - even tho in the covering letter with your results, they say that it is not 100% sure that you 'don't have BC' when they say it was clear ....

    Many thanks for the best wishes ..... I reckon I really had worked thru most of my anxiety when I went down the month earlier for the wrong date!!  DUH!   So it sort of worked in my favour today - i was quite calm! 

    take care ladies xx
  • kmakm
    kmakm Member Posts: 7,974
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    Excellent news @arpie! K xox
  • Flaneuse
    Flaneuse Member Posts: 899
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    @arpie That's all really interesting and a good outcome for you. I like the way you're thinking about the whole picture. And it sounds as though your surgeon is also thinking about the whole You and is being thorough. xox
  • tigerbeth
    tigerbeth Member Posts: 539
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    Great news@arpie , hope your med onc agrees with you & you can have a better quality of life.

    Hugs xx
  • lrb_03
    lrb_03 Member Posts: 1,269
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    Good to hear that news @arpie.
    I received an invitation for my first breastscreen mammogram some weeks after my surgery (which was after completing 6 cycles of chemo). Coincidentally,  I was attending an education session at Breastscreen later that day,  so I advised one of the staff there, and how much it had upset me. My question to them was to the effect of why they didn't do some sort of cross referencing with the cancer registry. Surely that should be possible in this era.

    Like many others here, I have dense breasts. I don't plan on going to Breastscreen even when I do become elligible again. At least doing it privately, I 'm able to get the results the next day
  • Sister
    Sister Member Posts: 4,960
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    Oh @flaneuse - 15 biopsies!?  That makes me cringe.  I had 3 taken and the anaesthetic hadn't worked on one area (not unusual for me) - it was excruciating and they just about had to peel me off the ceiling.  The doctor or whoever it was, was a total dick though.  He bustled into the US room and told me really abruptly that I had to have this procedure (no gentle explanation or introduction).  Then acted as if I was overreacting to the noise of the gun - I'm not sure that he even believed that the anaesthetic hadn't worked in one spot - he certainly wasn't in the slightest bit interested.  The other staff did, though.  I have to say that he was the only person at Breastscreen (both locations I went to) who wasn't nice.
  • Blossom1961
    Blossom1961 Member Posts: 2,411
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    @Sister That happened to me to. Exact scenario. I went into full body shakes and couldn’t stop. Horrors
  • arpie
    arpie Member Posts: 7,733
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    That's a shocker, @Sister & @Blossom1961  - that would almost count as malpractice!  :(   Sounds like yours was in the wrong job, @Sister

    Even I jumped at the sound of the gun going off the first time .... tho at my most recent one in Dec, the lady Dr 'set it off' to let me hear it first, before administering it.   She must have had at least 5+ stabs at different angles (thru the same hole!), to make sure she got a lot of tissue - as the first needle was too fine & didn't pick any tissue up.  I expect that was due to my dense breast tissue?  She had to then use a wider needle for the rest of the stabs.  I have a permanent scar from this one!!

    Gosh - I've NEVER had ANY results the same day or the next day.  It has always been a minimum of a week's wait for me for all my tests/scans/biopsies etc

    @lrb_03 - I think I was more pissed off than upset, tho as it was your 'first attendance request' - totally understandable & just really bad timing  :(   It really annoyed me that there didn't appear to be any communication (as you say, cross referencing) between the various agencies, which still amazes me.  And the fact that you raised it with them & I've raised it with them & I bet hundreds if not thousands of others have raised it with them - and yet it STILL isn't being done!

    My surgeon actually said that I no longer qualified for Breastscreen now, for at least 5 years (as I'll be getting checked yearly for 5 years) - so in hindsight I was surprised that he didn't make contact with them on my 1st appointment in Jan 18!  Mind you, it was his first day back from holidays ....

    I also asked about Mets & the CTC tests (Circulating Tumour Cells) - but I will go over the conversation again & take notes (I recorded it) so I 'get it right'.  He DID say that he believed the % going on to get Mets was LESS than 30% ..... and that many of those are detected 10+ years later, even 20 years after diagnosis/treatment (as is the case with my Uke buddy - and hers is a slow growing one, so she will die 'with it', not 'from it' - not unlike a lot of men and prostate cancer - they reckon a large number have it 'when they pass' but are not affected by it and is not the cause of death.)  

    He DID mention that ILC was the 'sneaky one' and the need to be vigilant re possible Mets symptoms.  Basically - he said - if you have any unexplained aches/pains/whatever for a 2 week period+ .... get it checked out.
  • Flaneuse
    Flaneuse Member Posts: 899
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    @Sister That guy sounds like a total dick-biscuit. @Blossom1961 Fortunately, my anaesthetic worked. The noise of the gun is quite something though, isn't it?
    This afternoon is my one year check on my remaining breast: Mammo, tomosynthesis, US.
  • kmakm
    kmakm Member Posts: 7,974
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    Best of luck @Flaneuse. Hope it all goes smoothly and is as boring and unremarkable as possible. K xox
  • arpie
    arpie Member Posts: 7,733
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    All the best @Flaneuse - hope your wait for results isn't too long and that all is good.  The ladies doing my recent checks (knowing my diagnosis history) were really great, explaining everything to me as they went, even showing me stuff on the screen as they did it.

  • Flaneuse
    Flaneuse Member Posts: 899
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    Thanks @kmakm and @arpie My experience of the imaging people dealing with my breast has been great, so I'm hoping that continues.
  • arpie
    arpie Member Posts: 7,733
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    WOW!  I've just had a long conversation with the Nurse Counsellor out of Newcastle Breastscreen re my request to be removed from their email list for mammograms and why!

    They have a robust reporting system once they are aware that a woman who showed as 'clear' is then diagnosed with BC.  The only way they know of this is either as I did - writing a letter to advise them, or the surgeon sometimes advises them.  Otherwise - they just don't know about it at all.

    She was a lovely lady & covered most of the points I made in the letter, tho I still can't believe that they are unlikely to advise women with dense breasts that they should have an ultrasound!!  They have asked permission to access my scans/reports & will now be doing an in depth review of my Breastscreen film prior to my diagnosis, comparing it to the MG/US I had 6 months later, showing the tumour ..... and will advise me of the results.  She will also burn a DVD with my breast screen film & send it to my GP & Surgeon for their records.

    I've asked that she email me with a breakdown of the conversation (just so I have a record of it - plus my useless memory will forget most of it anyway!) 

    I also suggested she read Liz O'Riordan's blog & pass it on to any other health professionals down there to read - as a very realistic and believable account of a health professional's own history of diagnosis and treatment and side effects, plus recurrence.  

    Breast Screen  are notoriously difficult to find an email address for notification anywhere on their websites - so I actually sent my letter to Breastscreen's Facebook page by message!!   Otherwise, it is a matter of just putting pen to paper for a 'hard copy' to be posted to them.

    It is good to know that it was followed up on - and I would advise anyone else who has received a reminder letter to do the same.    

    Feel free to use any or all of my own letter in formulating your letter (changing the necessary bits to suit your own diagnosis.)  xx