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

arpie

Yep, it is the most impersonal bit of a form letter that I have ever received from anyone- EVER - but especially relating to my BC.   I am surprised it even had my name on the letter & didn't say 'To Whom it may Concern'.

If they are sending this letter out to everyone - I am not surprised that not many get their Breastscreen NSW Mammograms checked after being diagnosed!!

PLEASE, @JJ70  - show this letter to your contacts in BreastScreen WA - I would value their opinion on it, too

No 'Sorry that this happened to you' ..... as you say - no empathy at all.

They have taken absolutely no responsibility for not picking up the cancer - let alone mentioning the dense breast tissue issue (by way of explanation of not picking up the tumours in the first place!) 

I know that Port Macquarie's MG is a top of the range Tomosynthesis one - they also had access to the US & MGs taken at Taree when I had my Biopsy - not sure if it was a Tomosynthesis one tho - but at least it was another one to compare their own with .....  yet no mention of that

HOW FUCKING PATHETIC!!  And I am afraid - that this is the general attitude of BreastScreen NSW - they just don't 'get it', let alone CARE that 20%+ of the population aged between 40-49 and 75+ are thrown under the bus - when they have every right to be advised OF their rights.

I am SO angry 

KarynJ

I had my first post surgery mammogram last month. Armed with a bit of knowledge after reading lots of posts here I decided to ask about 3D mammograms. I casually asked the technician whether they had a different machine to do 3D mammograms? She hesitated a little but then said that the machine she was using is able to do 3D as well but "they" won't pay for the functionality to be turned on.  I didn't press any further but I assume it's a licensing thing that costs more and I'm also assuming (but honestly have no idea) that 3D ones don't attract a Medicare rebate so why bother? It's not like the 3D version is vastly superior at picking up hard to spot tumours or anything!!!??? Right??!!

KarynJ

I should add this was done through the public system and not Breastscreen Qld.

Afraser

I haven't gone through and compared bills but I am pretty sure that my follow up mammograms, done with my surgeon, have not changed In cost since he got his beloved 3D machine. I'd be rather vocally questioning that unused capacity, to be honest! 

kmakm

Hi @KarynJ. When I went for the mammogram (BreastScreen Victoria) that detected my tumour I was asked if I consented to be part of a study of 2D vs 3D mammograms. I would be randomly assigned which one would I would receive. Sure I said and signed the form. I got the 2D machine. When I went back for the recall scan I went straight into the 3D machine. The 'result' of the unfinished study was pretty clear I'd say... It's utterly insane.

KarynJ

Hi @kmakm I was surprised that they had the capacity but weren't using it but my tumour was originally picked up with an ultrasound.  So I didn't push the 3D issue.  I was scheduled for an ultrasound straight after the mammogram anyway.

After they found it originally in Feb 2018 with the ultrasound (private clinic) they shuttled me straight into the mammogram room again for a 3D.  It was visible on 3D but not 2D.  Good old anecdotal evidence hey? Who needs a trial/study??

Hi @afraser I meant to ask the surgeon when I went back 2 weeks later for my results but completely slipped my mind.

I've asked various doctors at various stages through my treatment why I didn't get MRI, CT, PET or any other kind of scan to see whether there were tumours elsewhere.  No one gave me a definitive answer.  Mostly it was, "not necessary".  I know it was a small tumour but still, it was grade 3 and pretty aggressive.  If someone had said, it's a matter of cost, I would have been straight on it and said, don't care, I'll pay out of pocket.  Generally they avoided the question.

kmakm

@KarynJ Not a single scan for me either. Even though I was the third woman in my immediate family to have and my sister had just died from it.

KarynJ

That's terrible @kmakm. I would think that your situation would prompt mandatory scans of all types. I have no family history so that was used occasionally as an avoidance tactic. 

arpie

That's disgraceful - everyone should have ONE complete body scan, to have something to compare it with later on.

kezmusc

It is interesting all the different treatments and procedures depending on where you go.  I do wonder why there is no streamlined approach so everyone gets the same run of scans and don't have to go around wondering whether or not something is still lurking else where. 
 
From what I believe the MRI is not normally done if the tumour is clearly visible on the mammogram and or the u/sound.  Sometimes it turns out a little different once they start the surgery though and MRI would give a clearer or confirming picture of the actual size to avoid nasty surprises.
Unusual about the CT @KarynJ I thought they always did this for staging straight up.  

My family history was not considered significant as it was my great grandmother that had BC.  However, my aunt recently finished the family tree and obtained as many medical records as she could along the way.  So my g grandmother had 8 sisters and it appears that 4 of them and two of their daughters had BC as well which I didn't know at the time and sheds a bit of a different light.

kmakm

@KarynJ @kezmusc I recall my BS checking on his computer screen to see if I qualified for a subsidised one, and saying I "just" missed out. If I had had one, presumably it would have seen the two areas of DCIS that the mammogram and ultrasounds missed, and that would have saved a lot of agonising about the mastectomy decision, and probably money. Hindsight says I should have insisted, sucked it up and paid the money. But what did I know? I was a deer in the breast cancer headlights.

KarynJ

Hi @kezmusc I thought it was unusual too that I had no further scans.  I thought it would have been standard procedure that if there was cancer in one area, surely it would make sense to check if it was present in other areas.  Apparently not.

Also, as a side note, I was never given an official Stage.  I got a grade but never a Stage.  I asked about this at my first annual check up.  I was told that it wasn't in my notes and they don't "do" Stages anymore.  WTF?  Everyone talks about Stage and Grade.  How can this not be a thing anymore?  So she told me probably Stage 1 but not to be concerned about that. 

@kmakm I totally get the deer in the headlights feeling.  I wonder now if my GP had given me a bit more of a heads up before I saw the surgeons whether I would have known to ask more.  If the GP had said, at this appointment you'll likely be told about what scans you need, further blood tests, surgery options etc.  Then maybe I would have been more prepared to speak up and say, why no scans?

Sister

I didn't find out my stage until after active treatment.  At one of my followups with the surgeon, I asked.  He told me in a way that suggested that he didn't find it particularly significant. (I was Stage 2 but wasn't sure from things I read if I could have been 3)  I guess in the end it is always about how it responds to treatment no matter what stage it is.

kezmusc

@Sister, I had to ask the BCN to tell me in dumb terms as I couldn't decipher the pathology mumbo jumbo and the surgeon wasn't really all that interested in it either .  There was also debate as to whether it should have been stage 3 or stage 2. Given node status vs smallish tumour.  Not like it really matters now anyhoo.

Emma17

I was staged IIa (12mm tumour) because 1 LN involved (clinically no nodes identified) but both BS and MO were dismissive of the staging.  MO said the 1 LN telegraphed no greater RR for the very low-risk tumour biology.  From others' comments here and my experience, the focus is on biology/grade/neoadjuvant response (if administered) than the stage.