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
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??
Excellent service and understanding from surgeon
Yesterday I had my 6th annual mammogram and ultrasound since my diagnosis and mastectomy back in May 2013. Last year when I went to make the appointment there was a 3 week wait for next available so this year I rang in plenty of time and of course got one almost straight away! This meant a bit of a wait until my appointment with my surgeon for the results and my physical check. Even at 6 years waiting is not a good thing. The ultrasound lady was reassuring and said everything looked good to her. The mammogram lady just said that it would be checked by 2 doctors etc. This morning I check my emails and here is one from my surgeon saying she has received the report and images and everything looks good, nothing worrisome at all. This surgeon ‘gets it’ that we don’t need to wait and worry! I’ll be thanking her when I see her in a couple of weeks for my actual appointment.
The Ripple Effect
My diagnosis, from a routine mammogram rather than finding a lump, has caused several of my friends in their 40s & 50s to have a mammogram themselves . Has this happened to anyone else? My best friend, the one to whom I tell all the things, and my partner in my India endeavours, got a call back 10 days ago. 10 days of being on tenterhooks, 10 days of that sick feeling I know you all know. She went to the clinic (in Perth) yesterday. Mammogram, ultrasound. They found two lumps. Biopsy. I had to wait a week for my biopsy results, my friend just 24 hours. Benign. Both gloriously benign! I feel so insanely happy it's almost as if I've had a phone call to say my diagnosis has been a horrible mistake! Mind you, I'd be mighty pissed off about the chemo... I wanted to share this joy. I haven't smiled much over last four months but I've been grinning all afternoon! :) <3 :)
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.
Costs of follow up scans and how many is too many?
I had my 18 month post surgical review yesterday. I still find these appointments rather depressing. Each time you see a different doctor (my surgeon is on long service leave) they have to trudge back over things that I have mostly tucked away at the back of my mind. Quote. "18months with the invasive cancer you had and no recurrence. You've done well." unquote. WTF. That was inspirational. Seriously what goes through some doctors heads? Isn't that why we get chopped, poisoned, nuked and hormone manipulated??????????? There needs to be a class at med school on "how to not be an unsympathetic dick" Anyhoo. The point is back for another mammo, u/s and MRI. I haven't rung up for this years prices yet but last years costs were: Mammo gap between $180 and $220 depending if there is any need for biopsy. U/s gap $125 MRI $575 no medicare rebate. Seems I am no longer in the high risk group...hahahahaha so nothing is bulk billed. So if you think you might have cancer or a strong family history you can get bulk billed, if you have had cancer you no longer fit the "high risk" check boxes so you get to pay I also wonder how many tests is it safe to have? I counted up in the last 18 months I have had 7 mammograms, 6 u/sounds I think, that could be more and 3 breast MRI's, 2 brain MRI's, 2 CT's and 2 bone scans and 1 bone density test. Whack the radiation on top of that and am I nuking myself into more problems??????
Scan day tomorrow
Double whammy tomorrow. It is my first mammo & U/S since diagnosis PLUS I'm seeing my onco for ongoing lower back & sciatic pain to arrange scans to 'rule out anything'. Both, of course, have me feeling edgey and melancholy. Lots of 'naaaah, you've got nothing to worry about' from the fam, which is well intended, but not very comforting. Wish me luck! (and some sleep tonight haha)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 ....
Second mammogram post diagnosis year 2
Hi everyone, Yesterday I went for my 2nd mammogram and ultrasound post treatment. I did cry this year or feel that horrible scan anxiety. Horaay! Last year I was a complete mess and had tears flowing as I had my first ultrasound post treatment. This year I was a little nervous but ok. My husband patiently waited for me while I went it. I was there for over 2 hrs and my results were given immediately. I am clear. No evidence of disease. Another Horaay. We celebrated with a glass of bubbles 🥂 after the news at a lovely place on the Brisbane River. It was raining but I didn't even notice because I was so happy with my news.
Contrast enhanced mammography
Another year down and happily another clear scan. My surgeon said that from next year Peter Mac are doing contrast enhanced mammograms where they pop an iv in, inject the dye then take the pics. Royal Melbourne has been doing it so PM have decided to try it too. Done in conjuction with tomosynthesis it gives a far clearer picture of any early stage breast cancers that can sometimes be missed particularly if you have dense breast tissue, like me. Also it can lessen the need for further ultrasounds, MRIs and biopsies. Don't know whether anyone here has had one yet? If you want to know more there are several good sites on the net. I looked at www.breastimagingvictoria.com.au It gave a pretty good overview.
