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

@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.

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

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.

Thanks @kmakm and @arpie My experience of the imaging people dealing with my breast has been great, so I'm hoping that continues.

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.

Best of luck @Flaneuse. Hope it all goes smoothly and is as boring and unremarkable as possible. K xox

@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.

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.

@Sister That happened to me to. Exact scenario. I went into full body shakes and couldn’t stop. Horrors

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.