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
- On @arpie - forgot to mention that WA has the best BC survival rates in the country - I think it is marginal, only a couple of percent, but still - I wonder whether that is due to breast density notification and women seeking further testing? Perhaps also the recent encouraging of women 40-49 to attend (we still may see a rise in survival stats as this plays out) as BSWA now include women 40-49 in all new advertising (since mid 2018). I will check those details with Liz Wylie (CEO of BSWA) tomorrow at the conference. ;)
- Yes Irb_03 the rates are pretty pathetic. At least 40% of women 50-74 do not screen across this country. I am not sure about allowances in those stats for those of us diagnosed. That seems to be different across the states too. In WA, if BS has detected your cancer, you get invited back ONE year after that screen date, which is good for those women who cannot afford private screening, although is it most bulk-billed if you have had a BC diagnosis? Other states have a 5 year 'ineligible' period after diagnosis. Even though BS detected my cancer at a routine screen, I now want a 3D Tomo and an ultrasound every year.
My theory is, if women were invited from 45 (as the data shows they should be) this may in turn increase participation rates for those 50 and over - women getting into the system earlier and into a routine of screening, before the majority of menopausal symptoms arise, before having to do bowel screening, etc......If women knew that 20% of BC's are found in women 40-49 and that this only increases by 3% 50-59 then perhaps they would book an appointment. - Crikey @JJ70. I didn't realise participation rates were so low!
Is any allowance made in those stats for tjose of us now ineligible because of recent history of BC?
I wasn't Breastscreen diagnosed, but don't plan on going there when my 5 years is up, as my breast density hasn't changed since diagnosis, so I don't think I'd ever trust one. And that's beside the fact that by getting it done privately, I can see me doctor within 24-48 hours for the results - Good one, @JJ70 - I wasn't aware of that!! I couldn't believe that they said the 40-49rs
'didn't really count'!!!
Let's stir them up, girls - doesn't matter what state you are in - it is just that your opinion COUNTS!!
Now that the USA is advising their women of dense breast tissue - what excuse can they now have NOT TO advise Aussie women, country wide!
Bombard them with emails saying that their arguments are not valid - and that they are actually CONTRIBUTING to worse diagnoses - as younger women with dense breast tissue are exactly those who need proper screening, not by ignoring them - and EVERYONE with dense breast tissue needs to be made aware of this vital fact! - @arpie....love yr work.
You might want to point out to BSNSW that they have one of the lowest participation rates in the country and perhaps if they stop excluding women that are eligible their rates would improve. (2018 data)😏 - Sexually Active Comedians...also known as Fuck Wits"...
- Absolutely @Flaneuse @Sister @kmakm @JJ70 grrrrrrr
it is - RUBBISH!!! Am I the only one who has ever 'alluded to' dense breast tissue being difficult to identify tumours with mammogram? Apparently so!! ??
And 'THEY' (in numerous publications worldwide) 'allude' that breast density diminishes as you get older - which we all know is UTTER RUBBISH!!!! BULLSHIT!
On JJ's FB page "Can at 40. Do at 45" I wrote this (as they say younger women have dense breasts, so more difficult to detect!):
So ... once again, having dense breasts tissue will make it even MORE difficult to identify some Breast Cancer with a mammogram (in particular Invasive Lobular Cancer.) 'They' also say that Breast Density becomes LESS of an issue, the older that you become!! UTTER RUBBISH!!! I have always had 'lumpy breasts' and have had 'clear' mammograms until my GP found my tumours 6 months after my previous 'clear mammogram'! I am 66 & already been thru menopause. ASK THEM if you have dense breast tissue when you have your mammogram. If they say they are not allowed to tell you - DEMAND TO KNOW!! - It is a ridiculous weasel words response.
- @JJ70 See NSW Breast Screen letter above.
- If the current screening process doesn't work for younger women (or older women with dense breasts) why is there not another screening method offered at Breastscreen. Are mammograms the only game in town? Of course not.
