Election called
Hi everyone - it has been a while since I have posted myself but as always I love the many messages you share with each other that I have a chance to read. Last week Vicki (our Director of Policy, Advocacy and Support Services) and I were in Canberra meeting with both the Minister for Health and Shadow Minister to take them through our policy priorities. I hope you have had a chance to read them: https://www.bcna.org.au/latest-news/bcna-news/bcna-policy-priorities-2025/ These are driven by your experiences and where our Network wants the Australian Government to invest. Keep any eye out on our social media and through the Online Network on updates on commitments the parties may make. Love your work KP
Channel 9 News Tonight - how Mammograms are helping identify heart disease!
I’ve just seen an advert for Channel 9 News tonight - showing how Mammograms are helping to identify Heart Disease! Sounds interesting!! It could be worth watching ….. https://baker.edu.au/research/clinical-trials/mammogram-heart
to biopsy or not
I have recently found a lump (2 months ago) which I initially thought was due to my cycle but soon realized that even after my periods the lump still remained. I went to my doctor who then referred me for a mammogram and ultrasound. I arrived for my appt where I was told they weren't really keen on giving me a mammogram due to my age (36) and thought it best just to do the ultrasound, so I had the ultrasound and then started to get dressed, as i was doing so the radiologist told me not to bother as she thinks it would be best to do a Mammogram now. (after this i realised that they must of spotted something on the ultrasound). So i had the mammogram also on the same day. A few days later i went to see my GP for the results and was told they had seen dilated ducts with soft tissue present in my left breast and the radiology doctor has suggested a biopsy. My GP rang the radiology centre to speak to the Dr who wrote up my report and confirm whether it would be a FNA or Core biopsy, to which he confirmed a Core biopsy. A week later I went for my core biopsy appt at the same place i had mammo/ultrasound. Once again they decided to do a quick ultrasound and called the on duty Dr in to view. i was then told by this Dr (not the same guy that wrote up my initial report) that they wouldn't be doing the biopsy as he didn't see it as necessary. So didn't end up having any type of biopsy done on the lump. I now am very confused and worried that something has been missed as i can still feel the lump (it feels like a small rock covered in gravel) I have an appt with my GP next Tuesday but am unsure of what he is going to say. Im a single mother with 2 children and don't feel comfortable waiting a few months to see if the lump grows but i am unsure if i should get a second opinion or even where to go to get one. I have also reviewed the initial mammo/ultrasound report where the Dr states a biopsy is suggested. it also states that i have heterogeneously dense breasts whish makes it harder to spot any calcifications or masses on mammogram. Im confused as they obviously spotted something on the first ultrasound to warrant them wanting to do a mammo after firstly saying they didn't think it was needed .
First Scan post treatment’s Advice
Hi guy’s next week I’m going for my first mammogram and ultrasound since surgery and treatments I was wondering is 5 months after finishing radiation a normal time frame for scans i haven’t had a mammogram or scan since January 2020 when diagnosed and getting checked pre treatments also I noticed that my appointment with surgeon after scans is 2 weeks later would they really make you wait 2 weeks to notify you if something was wrong. scan day anxiety is setting in
I'm not impressed!
TL;DR - If you are a patient at public hospital in Brisbane, check your mammogram & ultrasound appointments. They may no longer be there. I had my second year mammogram and ultrasound today. It sounds so simple! I was diagnosed in late February 2018 by (private breast clinic) and referred immediately by my GP to a public hospital as they have a great reputation for dealing with breast cancer. And at the time, yes, they were fantastic. I was seen within about 2 weeks (on a Monday) and a week later I was admitted and have my lumpectomy on the next Monday. Wonderful! Public system at its finest! Nasty tumour ripped out, sentinel node biopsied. All good. I was assigned a breast care nurse (2 actually who job shared) and had follow ups with the surgeon and visited the Breast and Endocrine Clinic as required. Fantastic! Delays to appointment times but meh, it is what it is. No complaints. In March 2019 I had my first annual check up. Queried the technician about getting a 3D mammogram. Apparently the machine has the capability of doing this but no one was prepared to pay for the licence to activate it and turn it on. Had an ultrasound - technician noted a couple of cysts but nothing concerning. Had the follow up appointment for test results at the BE Clinic. Saw a random doctor who claimed to be some kind of breast specialist. I was also told I'd never see my surgeon again. She said the report was all clear. Yay! Great news! However, when I specifically asked about cysts, she said oh no, there aren't any. Hmmm suspicions raised. I asked about breast density. She couldn't give me a definitive answer. I asked what stage was my cancer (knowing it was Grade 3 but not stage). Oh, the response was, we don't use stages any more. Uh really??? Totally forgot at the time to ask for a copy of the report. When I followed up about a week later, breast care nurses said, not our problem. Email these people. So I dutifully emailed my request and heard nothing. And still heard nothing. Followed up 2 weeks later to be told they had never received the original request. <cough bulls*t> Eventually got the report and it was a drawing with some scribbles on it. Not exactly a professional document. So 2 days ago, I was mentally prepping for my exam this year and received a phone call from Qld XRay at 5 pm the day before my exam saying they are going to schedule my annual appointment. WTF? Apparently the public hospital have outsourced their mammograms and ultrasounds to Qld XRay and did this in November 2019 and obviously didn't tell anyone. Qld XRay also thought my appointment was 4 April and not 4 March. I told her, no no no, it's definitely 4 March and I'm holding the appointment letter in my hands right now. Of course, no availability on 4 March so I was rescheduled to 5 March. Not too bad, just one day delay. I can cope. But how furious I would have been if I'd turned up at the public hospital to find out it had been cancelled with no notice. Thank goodness I did get the phone call. So today I rock up to Qld XRay and I am very impressed that the first thing they do is give me a 3D mammogram. No mucking around with old 2D stuff. Excellent!! Ultrasound very thorough and I'm totally on board with the lovely staff. And the best thing is you have access to a Qld XRay online portal and can see your images within a few hours! No report thought until you've seen a doctor, then it becomes available. Anyway, they contacted the public hospital to get copies of last year's scans and results and hospital promptly tells them that they have no record of me. That there are no scans or results in their system. Are you #(*&ing kidding me? This after receiving a text message today reminding me of my follow up appointment at the hospital for next Monday. So Qld XRay has had to send off requests on my behalf to private breast Clinic and Breast Screen Qld (where I had a couple of scans done about 6-7 years ago) to try and source comparison scans. All of which is going to delay my report getting to my various doctors. So the public hospital - not good enough!!! Not happy at all. I don't know what's happened there over the last 1-2 years but something's not right internally. I shall be very interested to see what happens at my appointment at the BE Clinic next Monday. Sorry for this long and ranting post but I just had to vent. We rely on this stuff to go smoothly.
Anniversary
Today is the first anniversary of my mammogram. I was pretty stony faced. Nine months before my sister had died from breast cancer and I was resentful of the inefficiency at the front desk, the pink positivity messages and images plastered everywhere, and the long wait, despite the fact I had an appointment. I was asked if I wanted to take part in a study comparing detection results between 2D and 3D mammograms. I'd be randomly assigned. Always happy to be part of a medical study I said yes. I got 2D. It was a shabby shabby building, not a nice environment. The woman doing the mammogram was professional. Serious, but pleasant enough. She made small talk about kids, mine, hers. I get it, but I really didn't want to talk. I just wanted it over and done with, to get the hell out of that dingy place. The mammogram was uncomfortable but no more than that. As I was getting dressed she said sorry, I just need to do one more. Why? The image is a bit blurred, it's not unusual, the plates might have shifted slightly. Bra off and back I went. After it was all done she wished me good luck. Why? With the teenagers she said. Oh yes, you too. I left, recovered my mood and congratulated myself on getting it done, how efficient and good I am. Virtuous even... The boob she re-imaged (blurred image my foot) was the right one with the tumour in it, and three weeks later I knew what the good luck wishes meant. It's weird how the anniversaries of trauma are unsettling. I mean, time is a manmade construct and it's just another day determined by how long our planet takes to travel round the sun, right? I mentioned it to the psych on Thursday and she said the memories trigger our nervous systems to 'remember' as well, and we physically relive our response. I don't have trauma round that mammogram, but three weeks from now I won't be able to say 'this time last year I was happy' etc. My naive innocence was about to end and as I approach that time I am feeling unsettled by it. I theory my life is better now. I'm certainly healthier with, as far as I'm aware, a body free of cancer. However in fact, I'm sadder, sorer, mutilated, diminished and more tired. It's difficult to feel it's a victory. I hope the second anniversaries are better than the first ones. How are your anniversaries?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??Great Article re Younger Women missing out on being diagnosed - Warwick Daily News
‘Baffling’ $17k loophole costing women by Libby Hill 2nd Apr 2019 All those pink ribbons, pink ladies and pink-hatted cricketers have worked a treat. We're a breast aware bunch. We know one in eight women will be diagnosed with breast cancer, we know early detection gives us the best chance of survival and we know we need to check our boobies. What happens then, when you find a lump? Well, it's straightforward - you go to the GP without delay. But what happens from there can vary significantly depending on how old you are. Breast cancer is largely seen as a disease that affects post-menopausal women and while the average age of diagnosis is 61, about 840 women under the age of 40 are diagnosed with breast cancer every year in Australia. These young women are not being supported as well as you might think. Breast Cancer Network Australia (BCNA) CEO Kirsten Pilatti says some young women who find a lump in their breast will be told by their GP that they're too young to have breast cancer and dismissed without further investigation. "BCNA has heard from young women who had to go back to their GP three times before the lump they found was investigated," Kirsten tells news.com.au. "When the lump is investigated, there can be significant out of pocket costs as women under the age of 40 are not eligible for regular, free screening mammograms through the BreastScreen Australia program." It was mid-December when I went to the GP about a lump I'd found in my breast. That week my husband and I had been debating how much to spend on the children's Christmas presents. My GP charged $90 for the consultation and I got about $35 back from Medicare. I felt entirely silly wasting that money on a pea-sized lump that was probably nothing. Adelaide woman Libby Hill was out of pocket thousands of dollars just to get diagnosed with breast cancer. Picture: Calum Robertson I felt a bit less silly when she said it should be investigated and made an appointment for me to have an ultrasound and biopsy the following day. She wrote the appointment time and address down and I went along as instructed. I had the ultrasound but the doctor qualified to do the biopsy wasn't available so I was told to return in the New Year when there were more staff. The doctor on duty said it was probably a fibroadenoma and there was no urgency. Something didn't feel right and because I'm breast aware (thanks Campaign Pink), I insisted on a biopsy and returned the following day. I paid for each visit and was out of pocket almost $1000. In the months prior to this my mother, mother-in-law and my aunt had all had biopsies on breast lumps of their own. They were all detected through BreastScreen and the only cost to them was parking fees at the BreastScreen clinic. I was the one with the giant mortgage and two small children - why were they paying nothing and I was paying so much just to have a lump investigated? While older women pay nothing for screening, women under 40 are forced to pay up, even if they can’t afford it. Picture: BreastScreen Queensland. When I returned to my GP to get the biopsy results the following week, she bulk billed me. I had a very aggressive cancer, she said. I'd need surgery and chemotherapy, at least. I suppose she felt sorry for me with my kids in the waiting room (there was no time to find a babysitter). I remember being vaguely puzzled at not having to pay. I'd always been told my GP (who is excellent by the way) didn't bulk bill. It never occurred to me that billing might have been at her discretion. That's the thing I've since discovered about cancer, from talking to many young women like me. The financial side of it is baffling and unpredictable. You never know when you'll be bulk billed or when you'll be asked to pay. Whether you're a public patient or a private patient, the out of pocket costs for medicines and treatments are never clear. My friend Lisa is in regional NSW and paid almost $1500 just to be diagnosed at the age of 38. "I was extremely fortunate to have an emergency fund of savings because it was so expensive, especially initially, that I was stunned," she says. Another friend Alicia, also in her 30s, lives in SA and struggled to have her concerns investigated because she was pregnant at the time. She was charged for four ultrasounds that happened before diagnosis and for two biopsies, a mammogram and MRIs. "The out of pocket expenses have been detrimental to our already fragile finances with me being out of work due to treatment and rehab and being young family there are so many costs," she says. "The ongoing screening will continue to be a burden for our family. Even before diagnosis the cost of the ultrasounds were huge and I almost didn't have them done because of the high cost. I'm glad I did. This could put women off having potential lifesaving screening." The high cost of screening tests could put many women off being tested at all. Picture: AP Photo/Damian Dovarganes A 2017 BCNA report found that women typically pay around $5000 in out of pocket costs in the five years after their diagnosis, most of this in the first two years. To add to the confusion, the report showed the range of costs is highly variable. A total of 12 per cent of women surveyed had no out of pocket costs at all but 25 per cent of women paid out of pocket costs of more than $17,200. There is a huge disparity. Women under 40 are unlikely to have a nest egg to pay for treatment and many don't have a second income to fall back on. Young women typically have much more aggressive types of breast cancer than older women and that cancer is more likely to kill them. This means the treatment is harsh and it has a huge impact on their ability to work. For the past decade, BCNA have lobbied governments to extend the Medicare rebates for breast MRI and PET scans for Australians with breast cancer. Last week Opposition leader Bill Shorten said, "Medicare already subsidises similar MRI scans for men with prostate cancer - but not for women with breast cancer, except in extremely limited circumstances. "As a result, thousands of women are being charged up to $1500 in out-of-pocket costs for the scans used to diagnose their cancer, decide on treatment and ensure cancer does not return." Thanks to events like the Pink Test, we all know about breast cancer — but younger women are still falling through the cracks. Picture: Toby Zerna Labor has committed $47 million to subsidise breast cancer MRIs if elected this year. At the same time, Health Minister Greg Hunt announced $32.6 million "so breast cancer patients can have lifesaving scans covered under Medicare". Welcome news, for sure but let me say again: BCNA have been calling on Labor and Liberal governments to do this for 10 years. It is often said that if you're going to get the big C, then the breast is a good place to get it. High curability and a hugely supportive community to help guide you through it and a range of treatment options are available. We have BCNA, The National Breast Cancer Foundation, The McGrath Foundation and many others doing work that is nothing short of brilliant. They do so much for us but they're not our doctors. We're told we must be our own health advocates, we must ask questions, insist on tests if things don't feel right, seek second opinions. We're fighting for our lives, why does it feel like we should be fighting our doctors as well? Libby Hill is a 35-year-old journalist and breast cancer survivor. Continue the conversation @justadlib I recently attended a local club that had BreastScreen NSW Drink Coasters on the tables - advertising Mammograms for those aged from 50-74. I went around & changed as many as I could, advising the people on the tables that the correct age was from 40 - and to tell their daughters & daughters in law!! I just hope that some of the younger women who frequent the club see them as well
Painful mammogram and now recall for suspicious lump
Hi there, I'm not sure where to put this as I haven't as yet been diagnosed, but I'm terribly anxious and feeling very alone. I had a mammogram a week ago and still feeling very painful from it. Tingling in breasts and feeling hot in the chest. After I had it I did a bit more reading up and feel like I should have just done an ultrasound as it was a routine check and I'm 42. I called BreastScreen QLD to report it and kind of complain, but then they said oh, you are on our list to call back to check a lump. I had noted it before my scan. I had my first mammogram about 3 years ago with no effects, no pain and nothing suspicious. The next appointment is on Wednesday and I just want to be armed with as much info as possible as I had concerns about the mammogram when I was there but really feel like I was pushed into it when I was there because I didn't have enough info about how painful it might be and the radiation (which I'm wondering whether it has caused the heat). I keep trying to examine the lump and google all the different types, but it seems to change depending on the position I'm in. It definitely feels hard, but sometimes it feels like it's moveable, sometimes it even feels larger than just a few hours before, and I can't really tell the shape. I've been reading up on different options they might take at the appointment, which is ultrasound, which I'm fine with, fine needle aspiration or core biopsy. They also said diagnostic mammogram which I definitely DO NOT want to do. I appreciate that there hasn't even been a diagnosis yet, and maybe this isn't the most appropriate forum, but I'm super anxious and just need to speak to people who understand. Can anyone share their experiences on the different diagnoses methods? Which is the safest option without radiation or drugs? Thank you in advance.Help from everyone who are screen detected like me.
I was screen detected in April 6, 2017 when I responded to the invitation for screening mammogram. I had lumpectomy, radiotherapy and hormone therapy. I had to stop the hormone therapy (arimidex) for two months now as am having difficulty coping with tiredness, joints pain, depression and has been affecting my thyroid hormones ( had my thyroid removed and on thyroxine and had a laparotomy and laparoscopy for endometriosis before my breast cancer diagnois). I am having regular check up for my thyroid and endometriosis. My physical breast examination in June, 2016, 10 months before my screening mammogram did not find anything. I had a trauma insurance for almost six years which I cancelled when my work contract was terminated. I have been the main bread winner and the premium has affected our budget and decided to cancel it. The insurance was still in place when I had my screening mammogram but when the biopsy was completed my policy has elapsed and the insurance is now refusing to accept the liability because they initially consider the reading of mammogram as the date of diagnosis but now they are saying it is the date of biopsy. I believe my screening mammogram showed a stellate lesion with a high probablity that is malignant from the date of screening mammogram even without the biopsy. If you are screen detected like me when you are asked what date you were screen detected what date would you normally give? Will you say you are screen detected on the date of your screening mammogram or the date of your biopsy. When someone say they are screen detected would you only think that they are also diagnosed? I have been wanting to post this since I joined last year but I was struggling to talk about my diagnosis that time. I am slowly recovering after a year but I still have my constant anxiety everytime I woke up and I am feeling different especially if it is around my chest. Thank you for your help.
