Forum Discussion
So ... I received a Breastscreen NSW reminder for my 2 yearly mammogram!
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??
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??
112 Replies
- @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.
- 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. - 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.
- 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!
- I should add this was done through the public system and not Breastscreen Qld.
- 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. :o 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??!!
- 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 - That is a very odd letter indeed. They may as well have been talking about ants...
- WOW - that is really inferior. Just unacceptable really - not so much that it wasn't picked up by the BSNSW mammo (for we know that mammos are imperfect, especially with dense breast tissue) but the aftermath, their fobbing off of the situation and STILL no dense breast notification. The empathy level here is.....well...where is it? I'm looking for it...but shit it is not jumping out at me........ >:)
- @JJ70 OK .... so .... I gave BreastScreen NSW permission to review the ultrasound/biopsy results that identified my tumours and they also re-examined their own mammogram (that 'didn't' pick up my tumours which 4 months later were detectable by hand by my GP, so found 'accidentally', lucky for me!)
This is their review ..... TBH, I thought there would be more than 1&1/4 paragraph.
I am so pleased that I don't have cancer! I wonder what the fuck I've been going thru for the last 18 months, then??
I notice that they didn't comment on the ultrasound that they also had access to (and I understood they were going to) - and this also just proves that Dense Breast Tissue disguises tumours and that mammograms are not good enough at identifying cancers until they are much bigger and more dangerous - verifying that women with dense breast tissue need to be advised of this - and advised to then have ultrasounds or scans for peace of mind!
