Forum Discussion
arpie
7 years agoMember
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
- arpieMemberWas it your GP that suggested the MRI & CT, or your specialist @Flaneuse? It has never been raised by anyone for me!! Were yours covered by medicare?
- FlaneuseMember@arpie I had MRI and CT scans before surgery (in Jan last year). Recently had my one-year tomo and ultrasound. I didn't ask whether I would have any other scans before the end of year two. Might phone them and ask one day when I'm feeling up to it.
- arpieMemberPretty sure my 3D/tomosynthesis also didn't show mine either (as with the mammogram) - it was only the ultrasound that picked it up and even then, it was 'inconclusive' and suggested a biopsy to be sure to be sure. Have you had any other scans @Flaneuse - MRI, PET etc? I haven't, tho am tempted to ask for one, so there is something to compare it with further down the line!?
- FlaneuseMember@JJ70 and @arpie People slip through the nets. I had my regular Breastscreen QLD mammogram in Nov 2016 and received the "nothing to see here" letter - also a note that that would be my final screening with them, because I was approaching 75.
Nine months later, I found physical symptoms. At the Wesley BC, neither the mammogram nor the tomosynthesis showed anything. It took 1.5 hours of a three people ultrasounding me, to find it. Stage 2 Invasive Lobular (like 20% of BCs) - very diffuse and subtle, hard to detect. Ended up being a 12 cm tumour. And papillomas in the right.
I have dense breast tissue. My daughter and nieces have now all been off to have ultrasounds and will do so regularly. - JJ70MemberAre you on Fabcebook @arpie? I have been running a campaign called Can at 40. Do at 45. ( @Can40Do45 ) regarding screening mammography. Awareness that it is available from 40 and we are lobbying to get the invitation letter sent out at 45, as the data shows that screen detected breast cancers DOUBLE in the 5 year age bracket of 45-49.
I have campaign postcards, business cards and t-shirts.
I have written to every health minister and the CEO of BreastScreen Australia. I am on the Consumer Reference Board at BSWA to keep them honest about their promotion of services to women 40-49. I can send you some cards!! Message me! - arpieMemberOMG!! @JJ70 ... I didn't realise those under 50 can be tested for free! We must spread this around - is that Australia wide?? I thought it was only from age 50 to 74 (I 'like' the 74 BTW .... why not 75 or 76 ... Did knows there are enough older ladies diagnosed as well!!)
Yes, I must admit that a helluva lot of BC IS picked up early - but it is the most easily identified, not the tricky ones.
Yep, totally NOT CRICKET .... and about 90% don't have any family history as well, so not aware it may be them - as shown by the current advertising campaign - but many will still ignore it! :( Thinking it won't happen to them. - JJ70MemberYep to all that @arpie...and what about the massive SECRET regarding women 40-49 - eligible for FREE screening mammograms but not told they exist!! 20% of BC's are found in women aged 40-49 and these have been available since 1993 - when Bob Hawke lowered the age eligibility from 50 to 40. So for 26 years this has existed, still most women their 40's have no clue.
My BC was picked up on my 4th regular screen at 46, so I have a different perspective to you. I know it is imperfect, but the stats show just how much of a difference screening makes to the population. In total agreement regarding the cost to government and early detection. I am so completely over BreastScreen Australia touting early detection - yet not promoting their sevices to all eligible women and excluding women 40-49. JUST NOT CRICKET!! - arpieMemberAbsolutely, @JJ70 - pinch any bits you want & spread the word!!!
I seriously believe that their non-disclosure of DBT - is costing lives!! Just ask anyone here who is diagnosed straight up with Stage 4 - who have DBT - they could have been caught earlier! :( It is identifiable with 'other scans', earlier & still totally 'treatable' rather than being a terminal disease! :(
Yes, after 5 years, apparently in NSW, we 'can' revert to normal Breastscreens - but I won't be trusting it, for one!! If they haven't picked up on the first one, how could they possibly pick up on the 2nd one? :(
In the long term, it is a total waste of money to misdiagnose BC in the first place - as it costs more to the Gov/Medicare/Funds than if diagnosed early & treated early - let alone the mental anguish for the patient, the family & friends.
It is just NOT ON!
I am assuming I will be told the 'results' of their 'investigation' to my Breastscreen films vs my 'non certain' Mid North Coast Diagnostics US & MG, who then suggested a Biopsy ....... which found my tumours!
Thank GOD for my GP!! - JJ70MemberI totally agree about the DBT notification. It must become a national policy. 'Malpractice by non-disclosure' - I love it. May I steal it for Can at 40. Do at 45? Mandatory reporting of DBT has recently become law in many US states.
- JJ70MemberHi @arpie.
Investigate, but I think you may find that after 5 years, you can indeex return to Breastscreen if you so desire. From my understanding, this is the case for NSW, VIC and QLD .
No van or normal centre has 3D Tomo. Only assessment centres for recalled individuals. 3D Tomo is indeed better. It is fairly new and $$$$. Not only the hardware, but the reading of the images. Each slice of the image has to be read, rather than a single image.