Best Of
Re: Incurable breast cancer numbers almost triple previous estimates. World first data
Thank you @Mez_BCNA and all those who have helped make this happen.
I have just now written to the Queensland Health Minister and encourage others to do the same. Contact was easy as filling in an email template. With a state election on 26th October, we may have to write again if the government changes.
As someone with MBC this is truly a great start and a significant milestone. It is upsetting to think those outside NSW are still invisible and it is upsetting that the services we need aren't there because of it.
I really appreciate BCNA and the work you are doing.
I have just now written to the Queensland Health Minister and encourage others to do the same. Contact was easy as filling in an email template. With a state election on 26th October, we may have to write again if the government changes.
As someone with MBC this is truly a great start and a significant milestone. It is upsetting to think those outside NSW are still invisible and it is upsetting that the services we need aren't there because of it.
I really appreciate BCNA and the work you are doing.
Cath62
4
Re: Confused & Overwhelmed
Great advice from your son, @SlimTee - definitely do not get 'ahead of yourself' and stress out on the 'what ifs' .... cos they probably will never happen xx
Rest easy xx Your Medical team is deciding the best options for you, going forward, so put your trust in them xx
Rest easy xx Your Medical team is deciding the best options for you, going forward, so put your trust in them xx
arpie
1
Re: Incurable breast cancer numbers almost triple previous estimates. World first data
Just sent a message to the Victorian minister of Health. It would be nice to think that all the states have at least started. How awesome if Australia is the first country in the world with this info.
Re: Incurable breast cancer numbers almost triple previous estimates. World first data
Thanks @arpie. I made a comment on Facebook re MBC and Professor Fran Boyle asked me to join that group. Might be interesting but I think it is very early day so not much happening yet. Good to register now if those with Mets are interested.
Cath62
2
Incurable breast cancer numbers almost triple previous estimates. World first data
After 25 years of advocacy by BCNA, people with metastatic breast cancer (MBC) have finally been counted — at least in New South Wales.
In a data breakthrough that far surpasses previous estimates, the Cancer Institute NSW has identified there are 7900 (7850 women and 50 men) living with MBC in NSW alone.
This world-first announcement means people living with MBC are now visible in NSW, ensuring their needs are no longer overlooked.
Knowing how many people are living with MBC means we can plan a healthcare system, policy and services. This announcement will pave the way for all cancers to be counted and is a model that can be rolled out nationally and internationally.
To help ensure everyone is counted contact your state Health Minister and ask them to fast track the work of NSW in your state or territory.
For more information about the announcement, you can read our latest media release via the link Incurable breast cancer numbers almost triple estimates (bcna.org.au)
If you need our help?
We recognise the emotional weight of today's announcement on those affected by breast cancer. BCNA is here to provide support and resources to help you navigate through any fears or anxieties you may be experiencing. Please call our Helpline on 1800 500 258 if you need support.
Mez_BCNA
6
Re: Newly diagnosed metastatic cancer
Hi @Rhubarb21, I have that same pathology and I have mets to my spine and liver. I fractured my spine in January 2023 so that was the start of my mets. My original bc was in 2020 and I had surgery, chemo, radium and hormone blockers at that time.
I am.older than you but fit and active. It is very scary when you find out you have mets. I found the first 6 months absolutely terrifying but there is hope for sure.
I am currently on Fulvestrant injections every 28 days and I take Ribociclib tablets too. I get scans every 3 months. I had radium on my spine and that spot is not active now. My mets are also in my liver too.
What I have learnt is there is hope. There are many treatments available to prolong life and keep you healthy too. I still travel around in Australia and i am active most days. I do get fatigue. Trust your oncologist as they are amazing and so knowledgeable.
Take all the help you can get. I hope you have supportive family and friends. See a psychologist if you need to. I did and it helped. It takes a good 6 months to process this and realise your not dying and there is a long way to go. New treatments are coming and never give up. Feel free to reach out via the private message if you want to and join our mets group. There are some amazing ladies in the group and we really get it!
Breathe deeply, treat yourself and surround yourself with your favourite people ✨️. Best wishes to you.
I am.older than you but fit and active. It is very scary when you find out you have mets. I found the first 6 months absolutely terrifying but there is hope for sure.
I am currently on Fulvestrant injections every 28 days and I take Ribociclib tablets too. I get scans every 3 months. I had radium on my spine and that spot is not active now. My mets are also in my liver too.
What I have learnt is there is hope. There are many treatments available to prolong life and keep you healthy too. I still travel around in Australia and i am active most days. I do get fatigue. Trust your oncologist as they are amazing and so knowledgeable.
Take all the help you can get. I hope you have supportive family and friends. See a psychologist if you need to. I did and it helped. It takes a good 6 months to process this and realise your not dying and there is a long way to go. New treatments are coming and never give up. Feel free to reach out via the private message if you want to and join our mets group. There are some amazing ladies in the group and we really get it!
Breathe deeply, treat yourself and surround yourself with your favourite people ✨️. Best wishes to you.
Cath62
5
Re: With BC being hormone receptive what do you do/take for menopause symptoms
Hi @SamL890,
So Sorry to hear about the aches & pains, they are a pain! .... Do you have Hot Flushes as well? Apparently, an incontinence med (called Oxybutynin) also works on mitigating Hot Flushes! It is on PBS. Ask your Onc/Gp about that one? Another hot flush med is Veoza - chat to your Onc about them?
Re your aches & pains - when my hands didn't want to work, I went onto a short course of Steroids and they really helped - but you can't stay on them longterm, or it can reduce your bone strength & lead to breakages. Talk to your Onc about accessing legal Medicinal Cannabis Oil - it can help with both pain AND sleep issues and is a natural pain killer, unlike Opioids, which are synthetic.
There are some online Doctors who are running trials on the use of it - where you only have to pay for the Oil & postage (and not the Dr's fee) so you can try it for 4 months and decide if it works for you.
Sleeping tablets aren't recommended to be used long-term, either .... maybe discuss with your GP about alternatives. Or maybe look to change your bedtime routine - don't read in bed or watch TV - just go to bed & turn off the light.
take care & all the best
So Sorry to hear about the aches & pains, they are a pain! .... Do you have Hot Flushes as well? Apparently, an incontinence med (called Oxybutynin) also works on mitigating Hot Flushes! It is on PBS. Ask your Onc/Gp about that one? Another hot flush med is Veoza - chat to your Onc about them?
Re your aches & pains - when my hands didn't want to work, I went onto a short course of Steroids and they really helped - but you can't stay on them longterm, or it can reduce your bone strength & lead to breakages. Talk to your Onc about accessing legal Medicinal Cannabis Oil - it can help with both pain AND sleep issues and is a natural pain killer, unlike Opioids, which are synthetic.
There are some online Doctors who are running trials on the use of it - where you only have to pay for the Oil & postage (and not the Dr's fee) so you can try it for 4 months and decide if it works for you.
Sleeping tablets aren't recommended to be used long-term, either .... maybe discuss with your GP about alternatives. Or maybe look to change your bedtime routine - don't read in bed or watch TV - just go to bed & turn off the light.
take care & all the best
arpie
2
Re: Information Overload!
Seems about time for an update...
My daughter's birthday party went off without a hitch and she had a wonderful time. Though my knitted knocker disappeared up towards my shoulder over the course of the party and no-one thought to tell me I was majorly lopsided
Port-a-cath was installed and is now all healed up. It was much more painful than I expected from how the procedure was described. I'm getting used to having it there and negotiating hugs with kids whose heads are at that height.
Enjoyed a weekend away with the family at the beach which was wonderful, cold but wonderful. Cabarita Beach (northern NSW) is just stunning and reminds me so much of my absolute favourite place, Point Lookout on North Stradbroke Island.
I had my first chemo treatment last Tuesday. I'm on the AC-T protocol. I went in with low expectations, and hoping for the best. As the infusion finished, I suddenly felt exhausted. I had some nausea but was easily managed with the meds and finding foods that didn't set it off. Helped to not get hungry, hunger definitely is not good for nausea. I had horrible joint aches for the first couple of days. The first 3-4 days were the worst, the fatigue was pretty intense. I'm now at day 10 and feeling pretty good - gratefully so.
I had to go into emergency twice to get things checked out - of course these things happened on the days that my GP doesn't work so couldn't see them. The first was after my face & neck turned bright red - and I mean beetroot, bright red. No clear answer for it, likely a reaction to something - either meds or my skin deciding it suddenly didn't like something I was putting on it. The second, I woke up with a very sore ear and throat, spent all day in emergency waiting for bloods & swabs. Again, no idea what it was but sent home this time with antibiotics for just in case.
The emergency visits were a real head-f*k for me. I've always been the sort of person who brushes things off, works through sickness - I have a real intolerance for being sick (ironic, right?) and having to get every little thing just makes me feel like a big hypochondriac. I mean, there were people who were having real life & death emergencies while I was there, and I'm sitting there wasting people's time with a sore ear - it felt so dramatic. It's going to take some getting used to.
In anticipation of the hair loss, I enjoyed a final trip to the hairdresser and got it cut short. Then dyed it hot pink for a bit of fun I've booked in for a Look Good, Feel Better workshop - which looks like a lot of fun (for anyone coming across this, here's the link - https://lgfb.org.au/).
Anyway... that's where I'm at so far. Grateful for having a fairly mild time of it so far. It'll be good going into the next one with an idea of how I'm going to respond.
lorns
6
Re: Otis Foundation Retreats
Just bumping this one to the top again ..... after you have finished your 'active treatment' (Surgery, chemo, radiation) you can apply to the Otis Foundation for a holiday/break in your state. (Prior to Covid, you could travel interstate ... but this hasn't been reinstated yet.)
A wonderful initiative (started in Vic, who has 14 retreats) and 1-3 available in other states (sometimes, there are more than 'shown' ...) where wonderful philanthropic people with Holiday Homes make them available to those recovering from BC surgery/treatment (usually not during school holidays.)
You can take as many family/friends as the number of beds allows! Just take your clothes and food!! Everything else is included, free of charge.
https://www.otisfoundation.org.au/directory
There is usually a bit of a wait list, sometimes many months - so get in early ..... and you too, could enjoy a wonderful break, to help with your healing & recovery.
A wonderful initiative (started in Vic, who has 14 retreats) and 1-3 available in other states (sometimes, there are more than 'shown' ...) where wonderful philanthropic people with Holiday Homes make them available to those recovering from BC surgery/treatment (usually not during school holidays.)
You can take as many family/friends as the number of beds allows! Just take your clothes and food!! Everything else is included, free of charge.
https://www.otisfoundation.org.au/directory
There is usually a bit of a wait list, sometimes many months - so get in early ..... and you too, could enjoy a wonderful break, to help with your healing & recovery.
arpie
2