Best Of
Re: Newly diagnosed metastatic cancer
Just thought I would do an update.
So we have now discovered that I have ‘innumerable’ mets in pelvis, spine, ribs, sternum, scapula and skull. Honestly I think that the skull ones scare me the most, even though the oncologist assures me that it doesn’t mean that the cancer will go to my brain any quicker than if it wasn’t in my skull. I am onto my second broken rib since being diagnosed so am on quite a lot of painkillers (for me at least). Dr has got me on letrozole, ribociclib, xgeva and zoladex.
It is the strangest feeling being stage 4 from the start. While I know that I am ‘sick’ and I know that this will eventually kill me, I don’t feel sick at all. People keep telling me how good I look for someone who is essentially dying.
My kids are still doing amazing, and we have so much support from friends and our community.
I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.
Here’s to sticking around for a while yet.
I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.
Here’s to sticking around for a while yet.
Public patient Private radiation (Toowoomba)
Hi everyone,
Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from
a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh!
I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!
Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from
a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh!
I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!
Re: Information Overload!
I'm done with chemo! Yay 
I got through the full suite of Taxol and am out the other side. I have a short break before starting radiation next week. I will be done before Christmas - best present ever.
I'm still super tired and feeling very "grey". The hair on my head is growing back - interesting to see my natural colour after so many years being other colours. My eyebrows and eyelashes still give me away.
The last few weeks were rough on my nails - so incredibly sore. The nail bed seems swollen and quite a few are brown & lifting. You never quite realise how much you do with your nails! I expect it'll take some time for it all to grow out.
Feels weird to be out the other side of chemo.
I got through the full suite of Taxol and am out the other side. I have a short break before starting radiation next week. I will be done before Christmas - best present ever. I'm still super tired and feeling very "grey". The hair on my head is growing back - interesting to see my natural colour after so many years being other colours. My eyebrows and eyelashes still give me away.
The last few weeks were rough on my nails - so incredibly sore. The nail bed seems swollen and quite a few are brown & lifting. You never quite realise how much you do with your nails! I expect it'll take some time for it all to grow out.
Feels weird to be out the other side of chemo.
lorns
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Re: Struggling through Chemo
Hi lovely people, I have only just joined the forum and I am sure that it will be another wonderful tool in my journey with Breast Cancer. I was diagnosed 28th August, had a lumpectomy and lymph node removal x 2 at Tweed Valley Hospital on 26/9. I received the results of the pathology last Thursday 17/10 and I have Grade 3, Triple Negative invasive carcinoma. My Specialist who is a truly wonderful surgeon and human being has referred me to the Oncology team at Tweed Valley Hospital - I should hear from them in the next week. It is likely that I will need chemo and radiation so I am looking forward to seeing the journey and experiences of other wonderful women in this forum to help me to understand and to be able to make more informed as I embark on my own journey with breast cancer. 
Re: 16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
Oh @Emma1113 I wish I could give you the biggest hug. I’m so sorry this is happening to you at what should be an exciting time for you. I have nothing much to offer you in the way of comforting words, but I did meet someone going through a similar situation to you. I am 44 & have 2 older children & was feeling very hard done by when I was in the ward recovering from my second surgery to remove lymph nodes. Across from me was a lovely younger lady who was diagnosed during her pregnancy, she had a safer? chemo up till 36 weeks, then Bub was delivered. She had her husband & her Mum caring for Bub back at home & she was now having more aggressive chemo. I felt like I had nothing to complain about. All I can offer is to reach out to your support network & ask for the help & caring you need right now. The BCNA hotline is amazing, if you don’t have a McGrath nurse, look up the website & access one - public or private they will support you. Rest & be selfish.
Thinking of you xo
Does anyone have shoulder issues? Torn Rotator Cuff/Frozen Shoulder etc
Hi guys
It is well known, that, for some reason, women get more shoulder problems than men - specially around/after the age of 50 ... probably from lifting kids all the time & the laundry, shopping & other stuff ... (tho I never had kids, so can't blame that!)
Over the last 25 years, I've had a procedure done on both my shoulders - the first being manipulation under a block anaesthetic for a severe frozen shoulder, where I couldn't lift my arm above shoulder height & couldn't put it behind my back at all! (It took 6 months of physio/exercises to get it back to normal range of movement.) The 2nd was Acromioplasty, 10 years later - keyhole surgery on the other arm for torn rotator cuff & bicep/frozen shoulder - which took well over a year to get normal range of movement back. At the time, my surgeon said I'd probably be back in 10 years for another procedure .....
Fast forward another 5 years - This time last year I was diagnosed again with torn rotator cuff and frozen shoulder in the original arm (nearly 25 years since the 1st procedure - I was SO lucky it has lasted 'that long' without recurrence!) I tried to get hold of my original surgeon who did both procedures (who was BRILLIANT with shoulders) but sadly, he had retired early last year!
I put it on the back burner .....
So ... Back to the drawing board ..... At the time, I had a good look at my cupboards to see what may be aggravating the shoulder - and sure enough - a couple of heavy items that I used every day (including my big jar of Vegemite!) - was further away & higher up than they needed to be!
When removing them every morning for breakfast, it put an unusual angle on my left arm, aggravating the shoulder! So ... I rearranged everything in that cupboard, bringing the heavy bits to eye level & immediately to my left, instead of having to reach up & over to get them - so it was MUCH easier to get the heavy bits out - and VOILA! 12 months down the track, I have no pain in the shoulder at all!! YAY! I am hoping it stays this way!
If you are having shoulder issues - check out the placement of stuff in ALL your cupboards (not just the kitchen) and make sure the stuff you use more often, is closer & either at eye level or lower, as picking things up is usually less aggravating to the shoulders than bringing them down from from a distance & higher up!
take care
It is well known, that, for some reason, women get more shoulder problems than men - specially around/after the age of 50 ... probably from lifting kids all the time & the laundry, shopping & other stuff ... (tho I never had kids, so can't blame that!)
Over the last 25 years, I've had a procedure done on both my shoulders - the first being manipulation under a block anaesthetic for a severe frozen shoulder, where I couldn't lift my arm above shoulder height & couldn't put it behind my back at all! (It took 6 months of physio/exercises to get it back to normal range of movement.) The 2nd was Acromioplasty, 10 years later - keyhole surgery on the other arm for torn rotator cuff & bicep/frozen shoulder - which took well over a year to get normal range of movement back. At the time, my surgeon said I'd probably be back in 10 years for another procedure .....
Fast forward another 5 years - This time last year I was diagnosed again with torn rotator cuff and frozen shoulder in the original arm (nearly 25 years since the 1st procedure - I was SO lucky it has lasted 'that long' without recurrence!) I tried to get hold of my original surgeon who did both procedures (who was BRILLIANT with shoulders) but sadly, he had retired early last year!
I put it on the back burner ..... So ... Back to the drawing board ..... At the time, I had a good look at my cupboards to see what may be aggravating the shoulder - and sure enough - a couple of heavy items that I used every day (including my big jar of Vegemite!) - was further away & higher up than they needed to be!
When removing them every morning for breakfast, it put an unusual angle on my left arm, aggravating the shoulder! So ... I rearranged everything in that cupboard, bringing the heavy bits to eye level & immediately to my left, instead of having to reach up & over to get them - so it was MUCH easier to get the heavy bits out - and VOILA! 12 months down the track, I have no pain in the shoulder at all!! YAY! I am hoping it stays this way!
If you are having shoulder issues - check out the placement of stuff in ALL your cupboards (not just the kitchen) and make sure the stuff you use more often, is closer & either at eye level or lower, as picking things up is usually less aggravating to the shoulders than bringing them down from from a distance & higher up!
take care
arpie
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Watch this space!
We’ve been listening to your feedback and we’re excited to announce that the Online Network will be moving to a new platform in early 2025! This has been designed to better serve your needs. This will mean you will only need one login, one password for the Online Network and all our resources. We are committed to improving your experience, and we can’t wait to share these new features with you in the New Year. Keep an eye out for regular updates in early 2025.
BCNA
5
16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
As the title says, I am currently 16 weeks pregnant with my first child, I turn 32 in Feb and have no family history of breast cancer.
My surgeon has said I will need a mastectomy in the next week or 2.
To say overwhelmed and unsure about my future is a complete understatement. I have found limited people in the same position as me and really don't feel confident as much as everyone has told me to stay strong and positive.
I know I'm very lucky to have the support I do have around me, but obviously it's such a different situation that no one knows how to approach.
My surgeon has said I will need a mastectomy in the next week or 2.
To say overwhelmed and unsure about my future is a complete understatement. I have found limited people in the same position as me and really don't feel confident as much as everyone has told me to stay strong and positive.
I know I'm very lucky to have the support I do have around me, but obviously it's such a different situation that no one knows how to approach.
Emma1113
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Re: Palbociclib Side effects back
Well here I am again I made it from May 2023 to Nov 2024 then needed another break off the Palbociclib and didn’t that 4 weeks go fast again. Best part this time is neutrophils went up over 3 this time. Saw the oncologist understudy (I suppose they have to learn face to face)
start the Tablet back up tonight full strength again.
start the Tablet back up tonight full strength again.
I will keep doing whatever works to keep this thing at bay
OH YEAH forgot to mention I have met my first Great Grandchild a lovely little boy 10 days old today. Just going to hang in there now for one of them to have a little girl.
OH YEAH forgot to mention I have met my first Great Grandchild a lovely little boy 10 days old today. Just going to hang in there now for one of them to have a little girl.
Re: Scared about the side effects of treatment
Thanks so much everyone for your support and advice
I felt much better going into it on Wednesday thanks to this place of support.
I felt much better going into it on Wednesday thanks to this place of support.
I actually ended up having a severe allergic reaction to the paclitaxel though and went into respiratory distress! They had to press the alarm button and I had lots of medical people rushing into the treatment area. A bit of a crazy experience! Anyway, the nurses took good care of me and after some antihistamines and Ventolin I settled down. Not what I had expected though!! Anyway, a silver lining is that the oncologist thinks due to my tumor being on the smaller side when it was removed I will just continue on with the Herceptin and tamoxifen instead as she doesn't think continuing on with the chemo is worth the risk of the allergic reaction again.
So now I'll be starting the tamoxifen next week and will see how that goes.
Thanks again for all of your help and support xx
So now I'll be starting the tamoxifen next week and will see how that goes.
Thanks again for all of your help and support xx
Caity
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