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
- Well done @JJ70 .... I’m just suggesting the same thing to Breastscreen nsw ..... with a self addresssed envelope included with the requests and a tear off bit saying “not required any more due to .......”
We differ from BSWA, in that once diagnosed, we no longer qualify for Breastscreen mammograms - they must be done outside the organisation.
I am am currently replying/writing to the nurse counsellor regarding my own views re being advised of DBT (Dense Breast Tissue) As it has become a bit of a hobby horse for me now. ;) By not advising us, it is actually a form of malpractice by non disclosure!
I have literally just received the official letter requesting access to all my ultrasound/mammograms/biopsy and reports from all, including my pathology .... so that they can mount their own investigation into how/why it was not picked up by Breastscreen NSW Hunter New England! I think we know why ....
1. I have dense breast tissue
2. I don’t believe the buses are equipped with the latest 3D Tomosynthesis machines which are 40% more sensitive than the digital mammograms and more likely to pick up more tumours.What is Breast Tomosynthesis?Tomosynthesis is a revolutionary technology that gives radiologists the ability to identify and characterize individual breast structures without the confusion of overlapping tissue. During a tomosynthesis scan, multiple images of the breast are taken at various angles. These images produce a three dimensional reconstruction of the breast that the radiologist can scroll through in one-millimeter thick “slices.” Reviewing breast tissue slice by slice removes the confusion of superimposed tissue found in traditional two dimensional mammography, allowing for more accurate diagnosis.
- @JJ70 Good idea. You're doing an amazing job in that field.
- Love your letter @arpie. In WA, if you are diagnosed with BC (via BreastSceen that is) you are invited for ANNUAL mammos, one year after diagnosis. Gotta love BSWA - they are on to it. One thing they need to straighten out though - and I am not sure how with patient confidentiality - is the recall of women who have had DMX. My friend got recalled a year alter her diagnosis and she had no boobies left to screen. She was a bit upset by that. I am part of BSWA's Consumer reference Group and brought it to their attention, but don't think a solution was found. I was thinking along the lines of the breast care nurses in hospitas having a BreastScreen form for patients to sign, declaring their DMX and to be removed from recall list.
- @MvB Same!
- Yes, apparently we need to worry that all our info will get hacked. I'm a bit like..."hack away...enjoy"!
- Me too @MvB. I stayed in. I thought it would be useful in the years to come if my doctors for whatever issue could see, say, that I had a big problem with low BP during my BC treatment. It will be interesting to see how it plays out.
- Yes! I saw all the talk about the pros and cons on "My Health Record" and thought...happy for everyone to know...hopefully the dots can be connected.
- @arpie @MvB Maybe My Health Record will help with the data base link up. For those who haven't opted out of course.
- Hi @Arpie, no I never did BreastScreen because I asked for a mammogram in my early 30's that wouldn't have been covered by BreastScreen and which started my current journey (hate the word journey! :smile:). But I have had very few letters from them which makes me think this is part of a new "push" - which is good overall, if not a bit frustrating for those of us already diagnosed.
- Thanks, @MvB - So 5 years ago - did you actually have a MammoGram thru Breast Screen? Yes - the ducks all need to be lined up to have an effective screening history - from which they get their 'percentages'!
I am guessing that a lot of women may just toss the letter once they've been diagnosed (specially if they have been screened with BS in recent years) as it either upsets them or pisses them off ..... which is a real shame, as there is then no record of what is happening with those women after that 'dodgy' MG. I happily went along for 15 years, every 2 years ... with 'clear' results, including the one 6 months prior to my own detection (accidentally by my GP when I went for a pap smear - she said 'I'll check your boobs at the same time!' Thank God she did!!
So hopefully this post will encourage women to actually contact BS when they get their reminder & have the review done on their 'most recent' BS film vs their diagnosis films, to see if they CAN see the tumour that they 'missed' and whether it was dense breast tissue that contributed to it.
Take care, wishing you all the best with your treatment xx
