Important update: Your Online Network will be 'Read Only' from 5pm on Wednesday 19 March, This means:
you can search and browse to view public discussions and comments, however you can't sign in, view private group discussions, add new posts, send messages or join private groups (read full details via link) here.
you can search and browse to view public discussions and comments, however you can't sign in, view private group discussions, add new posts, send messages or join private groups (read full details via link) here.
Best Of
Re: Friday Funnies
You have NO idea how TRUE this is ... I can forget the directions of a packet between taking the contents out of said packet & putting the packet in the bin!!
arpie
5
New Online Network - Important Information (Please read)
We’re thrilled to let you know that we are launching a new-look Online Network platform that will be easier-to-navigate and enhance your experience with us, while still allowing you to connect with others going through a similar breast cancer experience.
So that our team are able to migrate your information over to the improved platform, there will be an Online Network pause from 19-27 March, 2025. During this time you will still be able to access the Online Network however in READ ONLY format, which means you can continue to view everything but you will not be able to start a discussion or comment on a post.
After 27 March, we’re excited to welcome you to experience the refreshed Online Network. We’ll be in touch with further guidance on how to login soon!
We’re very aware how important our Online Network community is, and we apologise for the inconvenience of this disruption. If you need information or support during this pause, please reach out to BCNA's free and confidential Helpline on1800 500 258.
BCNA
10
Re: Newly diagnosed
@arpie Thank you, so far no mention of having to travel, but in saying that Ive only spoken with my GP. My biopsy was only positive for HER2 and Estrogen Receptor. Negative for Progesterone. I made contact with the McGrath nurse as I hadn't heard anything from anyone. she got onto it and got a surgical appointment sorted and spoke with the Director of Cancer Unit. I'm doing ok but also struggling, I am recovering from a recent hysterectomy and prolapse repair that has nerve damage. my first follow-up with the gyno has just been canceled until I don't know when. This week, I also see surgical for skin cancer. so a lot going on all at once.
Aliesha
5
Work/grief/sadness
Hi all,
apologies if this has already been discussed but I couldn’t find anything elsewhere.
apologies if this has already been discussed but I couldn’t find anything elsewhere.
I’m 46, had a right mastectomy (Diep flap) and left reduction in early December for stage 2 invasive lobular carcinoma. My recovery went really well, no pain whatsoever. I still have another procedure to alter the flap and then have nipple tattooing but have to wait until later in the year. Started on Tamoxifen in Jan.
I went back to work at the start of March and since then have felt the wheels come off a bit. I went back on reduced hours but in a different role to what I usually do (but just as busy!) 3 weeks in I was feeling overwhelmed and crying at the drop of a hat. This role was only to cover someone else and when I asked for more time on reduced hours/duties I was given yet another new role which is totally unfamiliar to me. Consequently I ended up leaving work early this morning as I was in tears. I think because my recovery went so well I hadn’t properly processed everything that had happened before (diagnosis to surgery was pretty quick). And work seems to have triggered a huge reaction that I didn’t expect. It feels like the reality of all this has hit all at once and I’m on a huge emotional rollercoaster. I am seeing a counsellor and she’s been amazing. Plus I’ve started acupuncture.
I’m so used to be busy and I used to love it but at the moment, I just don’t have the capacity for it. Has anyone else had a similar experience?
I just found out today
I had my first appointment with my oncologist this afternoon. I had had a PET scan and MRI earlier in the week. I received the results today that the cancer has metastasised. They found a spot on my sternum, back and pelvis. I need to go have a biopsy on my sternum.
I was diagnosed with breast cancer on 8 February. 4 days after my father’s funeral. I just feel shocked and numb. I want to feel hopeful but at the moment I just feel hopeless.
What do I do to change my mindset? Has anyone else been through similar? I really need to feel like this isn’t a death sentence. I have 2 kids, 15 & 13. I want to be here to see them grow up! Do I even have a chance???
Re: Scared about the side effects of treatment
Hi Caity,
So sorry to hear about your diagnosis.
i was diagnosed in July this year with triple positive invasive ductal carcinoma - also in one lymph.
So sorry to hear about your diagnosis.
i was diagnosed in July this year with triple positive invasive ductal carcinoma - also in one lymph.
I finished my 6 rounds of chemo and targeted therapies (tchp regime) on 15 November and have surgery on 17/12. Then more targeted therapy and hormone blockers - it feels like long journey.
For me chemo was tough but doable. Key things I found helpful were to force myself to walk twice a day and do some form of yoga. If you don’t have a yoga practice something like the mediations/breathwork from insight timer can be helpful and some gentle stretching will help. Walking can be around your lounge room if that’s all you have the energy for or get outside and breathe in the fresh air. Just to help you sit with yourself and breathe. It was hard sometimes but in the end made me feel better.
For me chemo was tough but doable. Key things I found helpful were to force myself to walk twice a day and do some form of yoga. If you don’t have a yoga practice something like the mediations/breathwork from insight timer can be helpful and some gentle stretching will help. Walking can be around your lounge room if that’s all you have the energy for or get outside and breathe in the fresh air. Just to help you sit with yourself and breathe. It was hard sometimes but in the end made me feel better.
Be sure to tell your team about any side effects as there is often things they can do to help. I had my dose of one of the drugs lowered each time to minimise the effects. They want you to get through without smashing you more than you need.
I’d get Imodium and movicol since you never know which way you’ll go and some mouth spray like oral 7 to help avoid mouth problems.
also cut your nails short, apply nail hardner and keep them clean. Use unscented moisturiser like QV is helpful if you get dry skin. Keep a dairy of your symptoms both so you can compare rounds and know what worked to help you and to share with your team.
also cut your nails short, apply nail hardner and keep them clean. Use unscented moisturiser like QV is helpful if you get dry skin. Keep a dairy of your symptoms both so you can compare rounds and know what worked to help you and to share with your team.
If you are in WA BreadtCancerCareWA have free counselling services,support and classes (like yoga for breast cancer) I think the cancer council do Australia wide counselling plus as Arpie mentions the BCNA line. I was fortunate to have a pain psych already who was happy to keep me on for counselling. I also saw a cancer coach once for some advice on holistic ways to manage some unpleasant but not urgent side effects like mild fluid retention.
Most importantly you’ve got this. My mantra was I choose to be here now - and chemo does end.
wishing you all the best xx
wishing you all the best xx
FeR
5
BCNA calling out the government - failing to protect Australians from genetic discrimination
Breast Cancer Network Australia (BCNA) is calling out the government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework.
Cancer Australia launched the National Framework for Genomics in Cancer Control this morning, which aims to integrate genomics into routine cancer care, improving outcomes through personalised medicine.
BCNA welcomes the framework but condemns the Australian Government’s failure to follow through on its commitment to legislate a full ban on genetic discrimination in life insurance, a critical reform to ensure all Australians can access genetic testing without fear of financial repercussions.
“The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions,” BCNA Director of Policy, Advocacy & Support Services Vicki Durston says. “If genomic medicine is the future, then protections against genetic discrimination must be part of that future.
“No more excuses. There must be action before an election is called or Australians are at unacceptable risk.”
BCNA calls on the Government to immediately prioritise its promise to introduce a full ban on genetic discrimination in life insurance, ensuring all Australians can access genomic testing without fear. Read full media release via link BCNA calls out government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework (Media Release)
Take action now!
✔️ Share this post to spread the word
✔️ Contact your local MP using the form link Email your MP about delays in banning genetic discrimination | DELAYS TO BANNING GENETIC DISCRIMINATION IN AUSTRALIA
Mez_BCNA
5
Re: Awaiting formal confirmation - terrified
Thank you everyone, I just need to try and breathe and take it one day at a time. By the end of yesterday I had convinced myself I had stage 4 metastatic. The brain is a hard thing to control sometimes. I get the results tomorrow so I’ll know more then. I have a congenital heart issue so I think that will complicate things as well. I’m just going to hope for the best outcome possible. Thanks for the supportive words.