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
Another sister reporting for duty
Hi all I’m Linda, a 54 yo from the Barossa Valley in SA, a wife, mother to 5 humans and 1 furkid, a lover of all things Disney & Robbie Williams and living with a fairly new diagnosis of DCIS. Historically, I’ve had 3 lumpectomies previously between 2003-2015 and been having regular mammograms since. In late January 2024 I had my 2-yearly mammogram, no symptoms although I did tell my husband I had a bad feeling on the day. Four weeks later I got a call from BreastScreen SA asking me to come in for further testing on an area that looked a little abnormal but likely to be benign calcification. The following week I attended my appointment and had further mammograms, an ultrasound and a very uncomfortable core-biopsy. Two days later I attended the results clinic with my husband where we were told the pathology came back malignant and I had Grade 3 DCIS. It was not what I expected to hear. Within 24 hours I’d seen my GP for a referral, seen a private Breast Surgeon and had a date for surgery (hookwire and wide local excision). Surgery was done on 08/03/2024. Side note - I’m a Clinical Nurse and a very empathetic, supportive and caring person who has cared for many patients in my career including providing palliative care to a dying friend so he could die at home in the arms of his wife. I’m also resilient when required but make no mistakes, I am a hot mess right now. I’m a practical person who likes facts, likes organisation and control of my life so this waiting period between surgery and my post-op appointment (scheduled 22/03/2024) with my surgeon to get my pathology results is challenging me, draining me and playing merry hell with my emotions. Although I don’t know what I’m dealing with until I receive the pathology results and I appreciate there are such worse BC diagnoses than mine, so I sincerely hope I’m not offending anyone else, but I can’t help but question my mortality. What is wrong with me? Working in the Theatre sector as a Clinical Nurse gives me the advantage of knowing inside information on which health practitioners are considered top of their industry. So I know I chose a great Breast Surgeon but my over-active mind is wondering why he hasn’t done a CT scan, PET scan or bone scan to check me out thoroughly. I’ve had no blood work done. I lost 25kg in 3 months late last year which was attributed to an IBS diagnosis, but what if it’s related to my cancer? I have no family history due to being adopted. I reached out to the local McGrath Breast Nurse several days before surgery and was told I’d get a house visit my first week home - that was last week and I’ve heard nothing. No follow-up call, nothing. I know it’s only DCIS but I’m screaming out for support and I can’t talk to my friends about this - it’s just repetitive and often a very draining conversation. Sadly, I have a very fractured relationship with my mum so am getting next to no support or acknowledgment from her so it’s just all a bit heavy and dark for me at the moment. What I’d give for an “I love you” from my mum! I’m guessing that come Friday that I may start to feel a little less lost and vulnerable as at least decisions can be considered once the pathology is known. Am I right? All of this is overwhelming as heck to me and I’m not sure what I should be asking at my appointment on Friday. You don’t know what you don’t know!! So any guidance is gratefully received. In closing, I’m sending each and every soul the squeeziest of hugs and best wishes for a positive day. Thanks for reading my blurb! Linda xx :(
Breast Cancer Risk in Survivors of Hodgkin's Lymphoma
I discovered this resource from Hodgkin's International titled "Breast Cancer Risks For Hodgkin's Lymphoma Survivors" https://youtu.be/YRp4NLcS4Os?si=QwtFipIn5q4LGrNW At 15:22 on the video, the surgeon discusses The National Comprehensive Cancer Network clinical guideline on breast cancer screening for people who have undergone chest irradiation. This has important guidelines on when to start screening for breast cancer as well as methods of screening for breast cancer. At 17:51 on the video, the surgeon talks about The Childhood Cancer Survivor Study breast cancer risk calculator. Unlike mainstream breast cancer risk calculators, The CCSS risk calculator includes questions on previous radiotherapy treatment. I love that the surgeon provides strategies that survivors can use to advocate for themselves should they receive "push back" from medical providers.
The never ending circle
I literally go from ultrasound to mammogram to mri to ultrasound and then biopsies. This is about my 6th time in 2 years which they say is because of dense breasts. This is getting frustrating and the costs are so high. Has anyone else had this experience. At this stage negative but last two years this keeps happening. Back again for another ultrasound this week after mri.Over 350,000 women didn't have mammograms 2021-22 due to pain & discomfort .... NEW technology!
This was in the Newspaper yesterday ...... A HUGE number of women are opting out of mammograms due to pain (even tho not mentioned in the article - it is a very real problem) & discomfort of the current mammogram machines. I had my yearly scans 2 weeks ago & the lady said she wouldn't go 'too hard' on the squeezing ....but I still yelped on one side!! If you live in Brisbane & have access to Princess Alexandra Hospital - book your mammogram there & please let us know how much 'easier' it is?? We've always said that if testicular cancer was diagnosed with the same machine .... this new technology would have been invented decades ago ....
First year check up after lumpectomy
Hi all, I would like to know what your experiences were at your first year mammogram after a lumpectomy. I had a mammogram this morning, followed up by an ultrasound. I’m seeing my specialist next week but that is such a long time away. It’s so nerve wrecking. When would they recommend a biopsy? Is that usually done straight away after the mammogram/ultrasound showed something up or would my specialist discuss this with me first?
12 Years Cancer Free :)
Hi Lovely Pink Ladies. Thank you for reading my post today!!! Well, I am now officially 12 years cancer free in late August 2023 but I have had a few scares along the way as we all expect may happen including my latest saga. In June this year I had my routine Mammogram and Ultrasound done at Qld Xray. Of course I was thinking that it would be fine. Mammogram seemed to be ok then I was waiting on the ultrasound soon after. During the ultrasound the radiographer was very thorough as you would expect. Paying particular attention to the left breast and armpit where my original cancer was. I asked if there was anything found and she said she needed to see the doctor that does the reports. Then as the radiographer walked out of the room to speak to the doctor that checks the results I waited expecting her to walk back in and I could leave. How wrong was I? The radiographer came back into the room and asked me if I had an infection of any kind? I said no. Had an immunisation in my left arm? Again, no. Then she asked me if I had a cut on my left arm? I again said no, and then asked why was she asking me all these questions? I could tell by the look on her face straight away and that the length of time she was out of the room possibly meant something ominous was happening. The radiographer then said that they had found something on my ultrasound. My heart literally sank in response. When something is found on an ultrasound you know how that feels right? I asked what was it they had found? The lady said one of my lymph nodes was enlarged, and that it wasn't on any previous tests done. Luckily for me I'd had my previous Mammogram and Ultrasound in the same clinic so they could compare my results first hand and on the spot. I said how enlarged was it? She said enough to be concerned. Then she said she would again speak with the doctor. Of course my head was spinning, my first thought was CANCER!!! I could feel the tears well in my eyes, as I am now typing this. I get so emotional when it comes to my mental state regarding this horrible disease. The radiographer seemed to take longer than the first time to speak to the doctor. About 20 mins later she returned again and she could tell how concerned I was. The lady handed me a request letter to get a FNA (Fine Needle Aspiration) done. I said would that be in a couple of weeks? The response was no you need to get this done by Tuesday next week urgently. I asked was it only the lymph nodes in question and whether they had found a lump? The lady said no only the node and that the Mammogram hadn't picked up a lump nor the Ultrasound as such. So I needed my gp to give me a referral. This was a Saturday afternoon I was walking out of there so by the time I got back to my car after paying my bill it was too late to get an appointment with my gp and the surgery was closed. I left a message on the machine to say I urgently needed an appointment. Once I got home and my husband asked how I had gone at my appointment, I told him what had happened. The look on his face? He said to me, "oh no, is it cancer again?" I said I don't really know? I then told him how they want me to have an FNA immediately due to what was found. He hugged me straight away and I burst into tears. My husband knows exactly what I was going through with the worry and was my rock going through my breast cancer in 2011 to 2012. Then my husband asked how enlarged was it? I told him it was 6mm and with bulky features and poorly preserved hila. Also, that they wanted this done to rule out local recurrence. Category 3: INDETERMINATE FINDINGS. We were both so worried and I explained that I could not reach the gp yet as the surgery was closed. My husband said ring again tomorrow morning. Before I could ring the gp rang me and asked what was so urgent? I explained to him what had been found and he immediately arranged for a referral which was sent to me via email and to Qld Xray. On Monday they rang me with an appointment. They gave me one for the following Tuesday morning, which was the 20th of June at 10am. Driving to that Tuesday appointment, again my head was racing and I was wondering if I would have cancer again and if I would have to go through chemo again and all the craziness that goes with it. I had my FNA done and had the feeling that there wasn't enough cells captured for a diagnosis on the enlarged lymph node. Sure enough the person that had done the FNA had trouble getting cells off the larger node. She asked me if she could do some multiple sweeps as she called it on other nodes in the area? I said. "I am here now, go for it." Of course I was so anxious waiting the next 2 days for my gp appointment, where I got the news of not getting enough cells for an accurate diagnosis on the enlarged lymph node. I just knew it! I was not angry, just disappointed as I was hoping that it was all over. Of course it wasn't and only the beginning. The gp said that he would put me into the public system for an immediate appointment. I got a text the following week that it could be up to 30 days for an appointment. Then the next day I got a letter to say CATEGORY 1 30 days wait. I was so shocked of course as being a former cancer patient with possible recurrence was significant to me. I couldn't wait 30 days for an appointment, it would have driven me insane with the worry and the waiting. So I again went to see my gp who told me he could give me a private referral if I wanted? I said yes please. The private doctor rang me with an appointment for the following week and that he wanted me to get a PET Scan done immediately. I felt so relieved even if I had to pay, at least things were happening. Then a day before my appointment with the private doctor I got a text with an appointment with the public hospital. The receptionist at the private surgery told me to take the public one because the doctor in question is also head of the department at the public hospital. I had to wait a week but at least I had a time frame and I could cope with that knowing a date. The next day I got a phone call about the PET Scan and an appointment for the next day which was the 4th of July. I had to have a special diet to have my PET Scan done. I said to the man that rang me with the details, about how I am a Coeliac so I know all about a special diet as such. He said it was for everyone that got the scan so no biggie. Lol! Private joke obviously? They told me to drink a lot of water for the scan. When you have had 3 children holding it isn't easy. I was told I could go to the toilet but of course while I was being infused with the tracer I was hooked up to a machine which was supposed to be an hour. After 45 mins I couldn't hold it any longer lol. The nurse said it was long enough for the procedure and that I could bolt to the toilet once I was unhooked. I sure did lol!!! Then after the scan which was about 20 mins or so I again bolted to the loo! A little embarrassing for me but a necessary evil. After a nice cuppa and my gluten free snack I had brought in I was done. I then waited for the results. I was amazed because I had the results around 6pm the same day. The doctor was incredible giving me this relief so soon. PET SCAN ALL CLEAR!!! If I had cancer anywhere in my body it would have lit up like a Christmas tree I was told. I had a PET Scan done back in 2011 too as a result of my highly aggressive non-invasive ductal carcinoma. It was a 3rd grade tumour and stage 2 non-hormonal. No secondary cancer which is what they were looking for back then. OMG I was so thrilled and my husband too. I cried with relief although the scan has picked up a 3rd autoimmune disease to contend with. Then the wait to see the doctor at the public hospital. They examined me and told me that they wanted a follow up ultrasound done in 6 weeks time. I've had the follow up Ultrasound last week and again the lymph node is still enlarged. The radiographer, oddly enough, was the same lady I had in late June with my first Ultrasound. Again when she left the room and was away for 20 mins I was concerned. I am at my wits end over this, was expecting that it had returned back to normal? No such luck! They still have no idea why the node hasn't returned to normal and similar in size. So now I will need another follow up Ultrasound in 3 months time. My gp has already given me the referral and now I need to make another appointment. It has been suggested that I have a Mammogram next year in June 2024. Although I am still a Category 3 it is now classed as 'PROBABLY BENIGN FINDINGS' on the latest Ultrasound report. I would just like to know why this lymph node is still so enlarged? I realise it can be from an infection and that it can be that way for months...but? They are still going to monitor it so at least I am still in the hospital system should anything change right? Watch this space for next scan results. Finger's crossed for me that I can get off this emotional rollercoaster again please!!! :)
Biopsies and MG
Hello my friendly support friends, it’s me again! sorry, this maybe a silly question and it’s actually standard procedure I will be having biopsies on 02 Aug. it’s going to be core biopsies (both breasts). My breast care nurse tells me after the core biopsies, they will be doing MG ( same day). I thought the breasts would be sore after biopsies and it wouldn’t be fun to be put through the photocopy machine? Is this ‘normal’? p.s. I had US and MG done on 14 July already.
Blood test to replace mammo
Has anyone else heard or read about this? A research centre in England have successfully detected breast cancer using blood tests earlier than a mammogram would. They are currently doing further trials. How awesome would that be! I wonder if it will also detect metastatic. The blood test can apparently detect it up to five years before any symptoms appear. I am thinking the mammogram centres will try to block these trials ever coming to Australia. Oops, that is probably not a nice thing to say.
