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??

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.

Yes- i told my surgeon of the experience (not a breastscreen surgeon) and he recommended i report her. Did not have the strength or mental capacity to do so at the time. I know he spoke to the practice manager. Even today her words ring in my head- ‘reconstruction are not breasts-just lumps under the skin’. Her tactics were ruthless and very damaging. I think tomorrow i may make a phone call and see if she is still working there. Time to act now i am stronger if she has not been repromanded already.

I got mammogram reminders until I asked them to stop (as I am still having yearly mammograms with my surgeon, whose mammogram equipment is superior). I also suggested that asking why someone has not had their mammogram might be useful. If I had a bit more faith, this is one of the things that integrated health records could work on - percentage of positive diagnoses within 12 months of a mammogram, percentages of those without a check in more than three years etc etc. All I got when I spoke to Breastscreen to say I had been diagnosed and was having regular mammograms elsewhere was a fairly churlish 'so you want to be taken off our books, then?'. The answer was in the affirmative.

It is still very sad (dare I call it negligent!?) that those with dense breast tissue are not advised to have further screening. It is not a difficult thing to do. :( It would take 10 seconds of time. They have to check the screens that the images are OK - so they know then & there.If we can bring about this change alone - it will be good

@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.

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

112 Replies

Flaneuse
Member
7 years ago
@arpie There's a weird contradiction there: Younger women tend to have more dense breast tissue (therefore as you’ve alluded to, harder to diagnose) so we do not actively seek out this younger cohort.
Like, we don't want to screen younger women because the process sucks for them. ??
arpie
Member
7 years ago
hehe Considering I was a bit of an angry ant when I wrote it ...... her reply (in italics) was quite Polite!! (BTW - feel free for anyone wanting to add their two bits re Dense Breast Tissue to Naomi Coombe on the email below)

Many thanks for your further queries/suggestions.
Please see attached BreastScreen Australia position statement regarding breast density & breast screening (Click on PDF Link at the bottom.)
Also please see the link below for contacting BreastScreen NSW for any comments you wish to make concerning our position in NSW with regards to disclosure of breast density. Naomi Coombe (Program Manager) would be the contact person to direct your questions to.
https://www.breastscreen.nsw.gov.au/contact-us/contact-us/
I presume your suggestion of a tear off section is on the reminder letter that women receive to prompt a rescreen appointment?
As we send out in excess of 50,000 reminder letters annually (and thankfully a very small proportion of those women are diagnosed with breast cancer between screens) then this may not be considered necessary.
Having said that, I will certainly forward on your suggestion to our Marketing & Recruitment team for consideration.
Our target age for screening is 50-74 so we only remind women & advertise for women who are in that age group, however you are correct in saying that women from the age of 40 may choose to be screened in our Program. Younger women tend to have more dense breast tissue (therefore as you’ve alluded to, harder to diagnose) so we do not actively seek out this younger cohort.
I have also passed on your concerns to our manager here in Hunter New England (Rebecca Delaporte) and she will be responding to you by mail. (cc’d in email)
Once again I wish to thank you for your valuable feedback and suggestions.
I wish all the best.
Flaneuse
Member
7 years ago
@arpie Go, you good woman! Koala stamp to you.
arpie
Member
7 years ago
I must be getting stroppy in my old age ..... I've just sent this off to the Nurse Counsellor with Mid Coast Health, who had difficulty explaining why they don't advise women with dense breast tissue that they should have other tests!

Many thanks for that. I just thought of something else ..... when I was trying to find a contact address/email to send my letter, I found it difficult to find one - hence I used the messaging system on Breastscreen NSW on Facebook. Maybe there needs to be a tear off section on the letter with a box to tick to be removed - with another box to indicate that they have been diagnosed, with a self addressed envelope?

I understand that breast screening is actually available to women aged from 40, not 50 as most of the advertising seems to indicate? Why doesn't it show as at age 40?

Just days ago on the Breast Screen NSW Facebook page it shows: "over 50? "Regular breast screening is by far the best way to pick up breast cancer in its early stages ......"

Yet then says - early detection saves lives! There are MANY women between 40 & 50 who get breast cancer too, as you will know

Re the Dense Breast Tissue issue - if you ask anyone who has been diagnosed with invasive lobular cancer if they knew they had dense breasts and that the mammograms were virtually useless in identifying their condition -(white on white) most say No - they didn't know. If asked if they would have had an ultrasound or other scan if they'd known - most say yes. They are also incredibly angry that they weren't advised. It is actually malpractise by omission, as the radiographer can see it on the film when they check it on the day - and it could be a death sentence if it is not picked up til Stage 4 - as it is difficult to feel, even by hand.

I wonder what would YOU do? Knowing that you had dense breast tissue and the issues around identifying cancer - I bet you would be having an ultrasound or other scans, to be sure?

It is pretty obvious to me that women with moderate to high dense breast tissue need to be advised, on the assumption that invasive lobular IS already being picked up via mammogram already on the lower dense breast tissue women? Can you confirm that? But how would you know, if they are not advising you? If they are also being missed .... obviously EVERYONE with dense breast tissue needs to be advised. I'd been having mammograms for 15 years with 'clear results' every time ...... if I'd waited until my 'reminder letter' last month - it may now have been much worse, in my nodes or even stage 4 - and still not likely to be picked up by mammogram.

THE WOMEN WITH DENSE BREASTS NEED TO HAVE THAT CHOICE! If they decide not to - so be it. But they need that choice to KNOW that they have dense tissue breasts.

With WA already advising their clients (and now the USA - see the press release below) - why isn't Breastscreen NSW asking them how they got around that 'who do we tell' issue. Just tell all of them!

This has become a bit of a hobby horse of mine & I am madly advising any women that I know - to make sure they know whether they have dense breast tissue. Mine were always called 'lumpy' - so I am assuming that is another 'term' for dense breast tissue?

Can you let me know when the Computer Dept has sent the Films to my breast surgeon and my GP

BIG NEWS IN BREAST DENSITY - IF THE USA CAN DO IT, WHY CAN'T NSW & ALL THE STATES?

Recently in the US, the FDA (Food and Drug Administration) now providing mandatory guidelines for the reporting breast density:
Breast density is a known risk factor for breast cancer. The breast is comprised of a mixture of milk glands, milk ducts and supportive tissue (dense) and fatty tissue (non-dense). The proportions of these tissue types vary from woman to woman.
Approximately 8% of women between 40 and 74 years of age have ‘extremely high density’ breast tissue.1 These women have a 50 to 70 percent higher risk of developing breast cancer.1 In addition, dense breast tissue appears similar to tumours on a mammogram, which can hide the presence of cancer.
It is not possible to tell the density of your breast without having a mammogram. A dense breast is not necessarily firmer, and cannot be detected by touch.
This gap in knowledge has now been addressed by the US Congress, who have directed the Food and Drug Administration (FDA) to establish minimum reporting standards. Mammogram reports in the USA will now have to state:
A qualitative assessment of the individual patient’s breast density.
An explanation of the effect breast density has on hiding the presence of breast cancer on a mammogram.
A reminder to patients that they should talk with their medical care providers if they have any questions about their breast density.
http://ow.ly/VDSA50mIb4I (To read more)
Flaneuse
Member
7 years ago
My pre-surgery CT scan did reveal spots on my liver (subsequent ultrasound revealed nothing) and thyroid (subsequent u/s revealed small nodules and I now have six-monthly u/sounds of those to monitor).
Flaneuse
Member
7 years ago
@arpie All covered by Medicare in Qld public system in Brisbane. Standard procedure for BC patients.
kmakm
Member
7 years ago
I've never pushed for one @arpie. The professor I saw last week is also of the opinion that they can send you down the rabbit holes of unecessary worry, stress, biopsies and investigations. I've never been entitled to a subsidised one and so the cost is a big issue for me as well. All our savings are gone due to my breast cancer, there's no buffer anymore.

I'm focussing on survivorship, and with a colonoscopy coming up and the possibility of a problem being found (because of my multiple risk factors), it's something I may yet need.

I'll always be slightly uneasy, but I have to trust my doctors and move on. I've done everything possible treatment wise, to reduce the likelihood of a recurrence or new BC. I plod on.
arpie
Member
7 years ago
Interesting, @kmakm .... have you ever asked for one, to be told 'No' - or you haven't chased it up as your BS isn't a fan?

My query is - if you don't have one at 'some stage' - how do they know what they are comparing the next one to?

We are given mammograms every 2 years 'just in case' and there is already some level of exposure to 'radiation' there .... We all have the odd dental X-ray 'in case' we have dental caries ..... so it makes sense to me to have a body scan at least once since diagnosis.

THEN - you only have others if you suspect something else is seriously wrong.
kmakm
Member
7 years ago
@arpie @Blossom1961 MRIs especially, CTs to a lesser extent, seem to be completely hit and miss depending on your doctor. There are no discernible guidelines as far as I can tell. It's up to your doctor. My BS is not a fan of them unless absolutely necessary.
Blossom1961
Member
7 years ago
@arpie My BS insisted on both a MRI and a CT before any treatment even started. Medicare paid it all, I didn’t even see the bill.

Forum Discussion

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

112 Replies

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