🏡 The journey can look completely different for our rural, regional and remote community members – and we are here to help.
We want to take a moment to acknowledge that the breast cancer journey can be especially challenging for those living in regional, rural and remote areas. From limited access to specialists and treatment centres, to the toll of travelling long distances for care, these members often face extra layers of complexity. Your voice matters and can form change to help yourselves and others in this position. For those interested, you might like to participate in this public consultation to develop a new Optimal Care Pathway - open until tomorrow night. Our helpline is here to help you navigate the journey for those living in less accessible areas, and any resources that have helped you overcome this challenge may be the answer someone else is waiting for. 💬 If you haven't already, connect with others in the Online Network group: Connecting rural, regional & remote areas
A new Cancer Clinic in Sydney to include Regional NSW Hospital partnerships as well
$20 million to establish world-leading clinical trial centre for all NSW residents 17 August 2024 A world-leading clinical trial centre in Sydney will soon provide increased access to international cancer clinical trials, thanks to a $20 million donation to the NORTH Foundation from philanthropists Greg Poche AO and the late Kay Van Norton Poche AO. The NORTH Sydney Trials and Research Van Norton Poche (NORTH S.T.A.R VNP) is a partnership between Northern Sydney Local Health District (NSLHD) and world-renowned Memorial Sloan Kettering Cancer Center in New York. NORTH S.T.A.R VNP will be located at the Sydney North Health Precinct, which includes Royal North Shore and North Shore Private hospitals, and will be available to all Australians, with regional NSW hospital partnerships also established. The centre will also be used to attract the next generation of doctors, scientists and researchers to Australia and provide greater funding to discover cures through research and development. Within months of the launch, the Centre will open four new studies including three clinical trials, providing access to new treatments for patients across metropolitan, regional and rural NSW. More info below: https://www.health.nsw.gov.au/news/Pages/20240817_00.aspxRegional and Rural Information forums - We want your feedback!
The below post was recently added to the private group Living in Regional, Rural and Remote areas . If you are not a member of this group and live rural, regional or remote, please consider joining. (Refer to the Monash Modified Model (MMM) that classifies locations according to geographical remoteness via the link https://www.health.gov.au/resources/publications/modified-monash-model-fact-sheet Hi Members, BCNA will be delivering information forums to regional, rural and remote communities, more details on the locations and dates will be shared soon. Traditionally these have been delivered as full day events from 9.30-3.00. We acknowledge the current cost of living crisis, work and personal commitments might make it challenging for people to attend a whole day event. So we are hoping to get a better understanding on preferred timings from our members. If you could please take the time to complete this short survey to help with the planning of the upcoming forums. https://forms.office.com/Pages/ResponsePage.aspx?id=dgJVk0E5rkyacWRewHkFZW92LAal_5RAn6S9wZSqa_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4u
Lung nodules
Morning ladies, It has been ages since I have put a post up but I regularly check in to make sure all my pink sisters are doing ok! I am now living in country Victoria after my husband told me the marrage was over (app he found my cancer journey all too confronting!) I had to go to hospital on Monday as I was feeling faint, breathless and my heart was racing. 3 days in High Dependancy and now on a beta blocker to slow my heart rate. On my discharge summary it says they found multiple nodule in both lungs! freaking out !!!! No one said anything to me whilst I was in hospital, I am seeing my onc on Mon. Has anyone else had lung nodules? Will try to keep calm untill I get to see oncologist but am feeling quiet alone at the moment. x
Upcoming event: Warrnambool Information Forum, 28 March
Breast Cancer Network Australia is holding an Information Forum for people living with breast cancer and their supporters. The forum will cover a range of topics including the latest in breast cancer treatment, strategies to enhance physical and emotional wellbeing, lymphoedema, and how you can live well during treatment and beyond. It will also be an opportunity to hear about what BCNA does and the services and resources we have available, alongside hearing from the local community groups and BCNA members who will share their experiences on a panel. Guest speakers will include Oncology Social Worker Carrie Lethborg, Breast Care Nurse Rebecca Hay, BCNA member Katie Monigatti, Specialised Lymphoedema Physiotherapist Alicia Boyd and a virtual presentation from Lymphologist Professor Neil Piller. For more information about the day and to register, please visit the BCNA website: https://www.bcna.org.au/news-events/events/information-forums/warrnambool-information-forum/Can you add more suggestions re travel & accommodation schemes in Australia
NSW Gov is asking for comments re travel & accomodation schemes - but, really, it relates to ALL states .... If you live in rural/regional/remote areas, make your concerns KNOWN to the powers that be ..... and JOIN OUR PRIVATE GROUP to share/agitate for better reimbursements! https://www.haveyoursay.nsw.gov.au/nsw-regional-health-plan?fbclid=IwAR1pSqCbCrPsargRf6xFxO817kIRjlrwB7Ll6evGRs1AOivg5VC9ZIaaWyU I reckon it is all of the above - as the hoops needed to jump thru for IPTAAS are ridiculous. 3 things that need to change asap - 1) ALL family members on the Medicare card should be able to contribute to the 200k a week travel required to access the payments - not each individual having to travel that amount themselves. 2) The specialist referrals for chronic/terminal conditions should last for the length of the treatment, not needing a new referral every 2 years. Either the patient gets better & the treatment/claims stop - or the patient passes away & the treatment/claims stop. 3) Essential Dental Treatment (eg extractions required before undergoing some forms of chemo) currently need to be done in a hospital to be able to make a claim (which takes up essential hospital beds) when they can be readily done in the Dental Chair .... THIS NEEDS to be changed - as we still need to travel for the service, but are not allowed to claim for it & it is an essential part of the patient's treatment. NOT having it done, can cause death or permanent disfigurement. And that is just the beginning ...... feel free to do the survey, tell them your ideas - hopefully some of them will be carried thru!Scanxiety - does it ever REALLY go away?
Does Scanxiety ever really disappear? I think not. It is 4 years in Nov since my ILC tumours were found, by accident, by my GP - as the rural BreastScreen Bus screens totally missed it ..... TWICE. Rural breastscreen buses do not have 3D mammograms - only 2D ones - and they are unlikely to pick up Invasive Lobular Cancer (that does not present as a 'lump' ....) and any cancer is almost impossible to 'see' in those with Dense Breast Tissue. If you don't know what breast tissue type you have, get your Surgeon/Oncologist to tell you - as Breast Screen NSW refuses to do so. If you are able to pull up a pic of your Mammograms .... you'll actually SEE if you have dense breast tissue, as much of the breast will showing as 'white' (rather than fairly clear) and as cancer also shows up as 'white' ..... the dense breast tissue hides the cancer. What followed was 2 years of anxiety as I had a recall on my first anniversary scans, which luckily, were benign .... but being rural, things all take longer to happen. Altho I had my surgery within days of seeing the surgeon (10 days after my diagnosis on Jan 5th was confirmed) it had taken 2 months to get to the diagnosis, with my biopsy being done between Xmas & New Year. The following year, the biopsy was on Xmas Eve .... so 2 x Christmases/New Years - totally stuffed!! For this reason, I brought my scan dates a month early to October - so that if anything needed doing (ie biopsy) I wouldn't be in the Xmas Rush! SO .... I head north today for my annual Mammogram and Ultrasound (luckily, having the resident specialist breast Cancer Radiographer doing both!) I'll take hubby with me & will probably even take him into the clinic room with me (if allowed) to keep an eye on him as he has mod-severe dementia. Otherwise, I'd need to arrange someone to sit with him, if I left him at home. Up til this morning, I hadn't really 'thought' of the scanxiety .... but then it raised it's ugly head again! grrrr. I am not expecting any adverse results - but with this beast, you just never know! I see my Rad Onc next week, also up north - my 2nd last visit to her - next year being Year 5 since detection. Wish me luck!!
New Podcast: Accessing Support for Breast Cancer in Regional and Rural Locations
Hello everyone! We've just released a new podcast about Accessing Support for Breast Cancer in Regional and Rural Locations. To listen, please follow this link, https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/episode-36-accessing-support-for-breast-cancer-in-regional-and-rural-locations/ The full list of previous podcasts, can be viewed here https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/.
