User Profile
Jenny_BCNA
Community Manager
Joined 2 years ago
User Widgets
Contributions
📄About BCNA's Online Network 👉START HERE!
Welcome to BCNA’s Online Network. The same network you know and love, but now even better and with a single login for our digital tools. Online Network has been designed around your needs, based upon your feedback. The platform enhances your user experience, security and accessibility, while connecting you with other people affected by breast cancer. Most of your data, settings, and preferences will remain as you set them on the previous version. If you have any questions, please go to our Frequently asked questions page in the first instance. To ensure we do not miss any of your feedback or technical issues please log these under the Get in Touch form to ensure feedback is collected in the centralised area. How to sign up and login If you’re feeling a bit lost after reading our Frequently asked questions page, please call us on 1800 500 258 and we will be able to help. Visibility of public posts and comments Please be aware that your posts and comments in the public discussions and public groups can be found and read by anyone, including those who are not members of the network. This means that what you share in a public discussion or public group may be read by a wider audience, please consider this when sharing sensitive or personal details. Community Guidelines We have updated our Community Guidelines. Please read through the guidelines before starting on the Online Network to ensure that you understand how we can support you and your obligations as a member of the community. The guidelines include information about community safety, privacy, prohibited content, feedback process and the consequences of breaking these guidelines. If you have suggestions or questions about the community guidelines or any aspect of moderation, please call us on 1800 500 258. Legacy Process Our updated Legacy Process explains how members of the Online Network can record their wishes for what happens to their account after death - either to have it memorialised or deleted. It outlines the steps for submitting written consent via email and explains the important role of a family member or legal representative in confirming the death and enabling those wishes to be carried out. For any questions, members or family can call us on 1800 500 258.3.7KViewsSign in to react to this post68Comments🗨️How to start a discussion
We’ve recently updated our system, so the way you start a new discussion has changed slightly. We know that any change can be a little confusing at first, but we’re here to help make it as easy as possible. If you’d like to share a question, experience, or start a conversation, just follow the steps below. And remember, if you get stuck or have any questions, our Helpline is always here to support you. To start a discussion, select a category from the Online Network homepage under Categories. In your category, select from the Forums in this Category list. Early breast cancer, if your discussion is related to early breast cancer DCIS, if your discussion is related to DCIS Metastatic breast cancer, if your discussion is related to Metastatic breast cancer General, if your discussion is related to something else. On the right hand side of the banner, underneath the Search bar, you will see the button Start a Discussion. Click on this button to create your post.948ViewsSign in to react to this post7CommentsRe: GenesisCare filed for bankruptcy on 01 June
Thanks for your response @Patience01. BCNA is aware of this article and our understanding is the Medicare overcharging has not affected patients to date but we will continue to keep monitoring. We can certainly understand that what is happening with GenesisCare may have an impact on their staff which may be concerning to you. BCNA's immediate priority is making sure that continuity of care will continue in Australia The Policy & Advocacy team gathers information and insights from a variety of sources including out clinical-experts on our Strategic Advisory Group to ensure we are getting unbiased and factual advice to inform our members.34ViewsSign in to react to this post0CommentsRe: GenesisCare filed for bankruptcy on 01 June
@Patience01and @arpie Just wanting to let you know that I reached out to our Policy & Advocacy team on this issue for any further information that we could provide. They referred back to GenesisCare Australia's statement that Arpie mentioned above. BCNA has a strong working relationship with GenesisCare Australia and will continue to monitor the situation. We will communication to our network if/when there are any changes that impact how care is delivered here in Australia.54ViewsSign in to react to this post0CommentsRe: Second opinion - Oncologist - how to arrange/navigate
Hi @laurie123 I'm sorry to hear about your experience with your oncologist. For information regarding seeking a second opinion, you might find this My Journey article "Getting a second opinion about your breast cancer treatment" helpful. Kind regards Jenny15ViewsSign in to react to this post0CommentsRe: Wonderful 'activity' opportunities available to BC folk after 'active treatment' finishes
thanks @arpie I have removed those links.7ViewsSign in to react to this post0CommentsRe: Reminder - 'New Look' Online Network 15th December 2022
@Zoffiel thank you for providing your feedback. We will pass it on.30ViewsSign in to react to this post0CommentsRe: Enhertu still,not on pbs 2023
Thanks @noosa_blue150 and @arpie Enhertu first went to the Pharmaceutical Benefits Advisory Committee (PBAC) in July last year and it was not recommended to be listed on the PBS. AstraZeneca re-applied late 2022 and the decision was published by the PBAC on Friday. The PBAC deferred making a recommendation for Enhertu noting that further consultation with the sponsor regarding the cost-effectiveness would be required, along with revised financial estimates. The decision can be found at: https://www.pbs.gov.au/industry/listing/elements/pbac-meetings/pbac-outcomes/2022-12/december-2022-pbac-web-outcomes.pdf BCNA continues to advocate to both AstraZeneca and the PBAC for Enhertu to be listed on the PBS to ensure equity of access to this treatment that has been shown to improve progression-free survival for people diagnosed with human epidermal growth factor receptor 2 (HER2) positive metastatic breast cancer. A Patient Access Program (PAP) which provides free access to Enhertu for those eligible is available. Those who want more information or who think they might be eligible should contact their treating teams and/or oncologists. You cannot access the PAP yourself and must go through your oncologist.17ViewsSign in to react to this post0Comments- 40ViewsSign in to react to this post0Comments
3.7KViews
68Comments
Groups
Young women & breast cancer
This group is for young women affected by breast cancer. In the context of breast cancer treatment, ‘young’ usually refers to women who are pre-menopausal. Here, you can connect with others who understand the unique challenges that come with a diagnosis at a younger age. We talk about things like fertility, pregnancy, early menopause, ovarian suppression, relationships, and the emotional impact of treatment and recovery. Whether you're newly diagnosed or further along in your journey, this is a safe space to ask questions, share experiences, and support one another. You are not alone during this uncertain and overwhelming time.Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.
