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
More information about Elle MacPherson's breast cancer treatment
For anyone who wants to know more about why Elle may have decided not to have chemotherapy. https://theconversation.com/elle-macphersons-breast-cancer-when-the-media-reports-on-celebrity-cancer-are-we-really-getting-the-whole-story-238231
Are you a breast cancer survivor who happens to be childless?
I have been a member of this online network since 2014, just after my diagnosis. At a recent breast cancer seminar at a city near where I live, something hit me like it hasn't in all this time, the subject of survivors who happen to be childless. I thought to myself, "Noone talks about this. Why?" This has led me to do my research, as you do, I found this demographic of women are at higher risk of breast and ovarian cancer. It is explained this way, you are at a lower risk of diagnosis if you have children. Interesting I thought, Nuns are at a higher risk of breast cancer and ovarian, not that I am a Nun but an interesting statistic that gets me thinking. Which brings me to why I am posting. I am putting it out there in a courageous way to see if there is another like me. Courageous because for 30 years after my extensive efforts to go forth and multiply I walked away childless. The one thing I learned was to keep it to yourself as I found there were lots of people willing to give you their advice, just like they do with breast cancer 'cures', an emotive issue is best kept to yourself for your own emotional survival. I am running a personal survey just to see if there are other women within this network who are in the same boat as me. Does anyone else feel a little left out when sitting in a seminar and not to be included in the discussions? I tell ya, there is a real sense of alienation, but culturally we are told to, 'just get over it', which is fine and life for me has been fulfilling in spite of it all. My GP doesn't know of another single patient like me which isn't very encouraging in finding my tribe, my mother always said I am different when all you want to do is be like everyone else. So please step forward if you are like me or if you know someone who has a similar story. I feel it is a subject that needs discussion and inclusion because in society we, the childless women are 1 in 5, by choice or by circumstance. Cheers Janet
4 years since BC diagnosis & joining BCNA & my surgery ...
Woohoo! This year was the first year that I didn't actually 'remember' that Jan 5th was the anniversary of my actual diagnosis of BC ...... so that must be a good sign! So - today - it is now 4 years ago since I joined BCNA (at the suggestion of a girlfriend in Qld who had been diagnosed a few years earlier) .... and a few days later, Jan 15th, I had my surgery. What a roller coaster ride it has all been .... lots of tears, anger, melt downs, but there's also been lots of laughs and education - all emotions are a part of this shitty disease - but, newbies, take note - it DOES get better! During this time, I've really appreciated all the support & info & camaraderie from the group - but especially the wonderful friendships that I've made along the way - with regular PMs within 'The Famous Five' over the years .... xx. So ... a big THANK YOU to all of you who've helped make a difference All the best to those who've been recently diagnosed ...... reach out, lean on us, ask questions, and we'll do our best to offer support and info to help get you thru the rough bits xx take care, stay safe
Help with decision on breast reconstruction
Hi, Last February in Townsville I was diagnosed with breast cancer. It was not in the nodes, but had spread from the ducts. Because of COVid19 I had three lots of surgery in March. The first was a lumpectomy, then the surgeon realised there was still some remaining in the breast so she went in a week later, removed the residue and transferred some tissue from the side of the breast to the front of the breast for aesthetic reasons. That surgery was not successful afterwards as the blood wasn't flowing as it should, so she went back in a week later to see if she could fix it, but did explain that the breast would have to be removed if she could not fix the problem. She took the breast. No chemo or radiation, and an excellent recovery. But no matter what I do I am always lopsided, and my new puppy has already put two holes in my prosthetic breast so I decided to look into a reconstruction next year. I went to see the reconstruction surgeon in Brisbane yesterday. He explained both options to me. I do not like the idea of implants, but the other option involves 7 or 8 hours of surgery. My concern is not that, but rather that I have a fat stomach, so I am wondering if he does the surgery that takes some skin and tissue from my lower abdomen, will I end up with a flat abdomen but still have the fat on my upper abdomen, (under my breasts). I am 65 years old in a couple of weeks. Hoping to speak to some-one who has had this surgery, so I can be clear in my mind that it will make me feel better not worse.
Isolation and staying happy
Today’s my Birthday 🎂. I received a lovely message from Jennyss wishing me a HB🌹 thank you so much xxx today is also the day I was diagnosed with Breast Cancer. It’s a day I’ll always remember but am so grateful for . very blessed to be here . I hope you’re all staying safe and well in theses challenging times ♥️♥️♥️
What the heck is going on with this BC thing????????
Ok, so I know the figures are 1 in 8 or 1 in 7 depending on which article you read but honestly. When I was diagnosed I knew one of my friends sister had had breast cancer and my family history 3 generations ago. That was it. I would see the bookings come through at work averaging one or two breast surgeries a week and sometimes there would be a few weeks with none at all. Now. WOW! 4 - 6 a week with the majority being 45-55yrs and a definite rise in under 40's. One of my friends mother in law diagnosed last year and now her mother last week. my daughters friends mother, a close work collegue a couple of months ago, a collegues sister a week after that, a collegues daughter around the same time. One of the senior medical consultants. A client drops a horse off to me and has to run or she'll be late for radiation! Bugger me. I get in to work today and ask where so and so is. "Oh, haven't you heard" She's been diagnosed last week and is off for bilat mx and ax clearance. All of these people I know in my little circle diagnosed within the last 12 months. Seriously what the heck is going on?
Just touching base :)
Hi lovelies I've just got back home from surgery last Thursday :). On the pre-op scans they found a 2nd mass which had been "overshadowed" by the main mass on previous checks, so that's been taken away as well. Lumpectomy (with the 2 masses) & full axillary lymph clearance (lymphs were already proven as malignant in the initial biopsies) & I must say that the surgical team did a very lovely job with the lumpectomy :) I have the surgical follow up appointment next Friday (before people start their Xmas breaks) & the 1st MDT meeting after Xmas will be 7th January. So it's a quick trip down to Tassie on New Years day to see our daughter. The poor thing only just moved to Tasmania & 2 weeks later I rang her to say "It's all okay, BUT Dad's just had a Heart attack!" & then 2 weeks after that I rang her again to say "It's all okay, BUT I've got Breast Cancer!"... I figure we'd better see her just to prove that we really ARE both okay before we start getting organised for the next steps, with Chemo starting sometime in January :) Happy holidays to all everyone. <3Great 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
