Metastatic Breast Cancer found just by accident
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I’ve just read a few comments & am so glad you are allowed to say Fuckity fuckity fuck on here
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Dear Enaid,
I'm so sorry for your shock diagnosis. As Iserbrown said when you have all of the information and a plan, you may feel better. Lots of hugs, thinking of you.1 -
@Enaid welcome and sorry to hear of your situation.
You can say pretty much whatever you would say to your friends here. You can also say things that you wouldn't say to your friends
We have all the personality types you would find in any society, and some of us have a preference for 'direct' language. Very refreshing, in my opinion. Good luck. MXX4 -
So sorry to hear you are goin through that .... myself got diagnosed breast cancer bout four weeks had biopsy needles poked here and there had ct scan only to find it’s gone to bones in back has not gone to nodes or organs so yesterday went for app with oncologist she asked if I knew what was happening I felt like she thought I was stupid did not know anyway mine is estrogen pos so got told no chemo no radiation no surgery goin on tablets to reduce it and stop cancer growing ... I know this is incurable but classed as chronic disease so has anybody has have same as me and is this normal any advice please0
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Hi @Not_good_63_57,
Ask for the hospital Breast Care Nurse to call you or find a McGrath nurse ASAP. https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/.
They will be able to help you find the answers to any questions not addressed by your oncologist so far.
If you want a second opinion from another oncologist, definitely get one. If you do not like your current oncologist, you can change docs, even in the public system. Your GP may have suggestions - or ask for recommendations here at BCNA, from those in your area/at your hospital. Are you a public or private patient?
Take a support person with you to those important appointments. Keep your own files and get copies of test results etc.
I hope that helps you. L xxx3 -
Hey thank you
I’m qld so don’t know if there is McGrath nurses up here
no I was not happy with oncology doctor thought she was bit rude
I have no idea cause it’s still in breast why they leave it there it’s only spread to bones in back I’m Atari g tablets next week plus injection for bones
I’m public system but found out I can go to my local hospital which has an oncology dept so I’m goin to do that least they might b nicer2 -
@Not_good_63_57 - I am so sorry you've had a run in with an unsympathetic Onc ...... my first Onc was similar - I got the impression that I was wasting his time, as my condition wasn't 'serious enough' to warrant his attention! On one of my appts he asked "What are you here for?" Well, I would have thought that was totally bloody obvious as it was all in my notes (which he hadn't bothered to look at!!) So I swapped to a lovely lady Onc who is very good with me.
I think you have a pretty good understanding of your issue, tho unsure why the ‘no surgery’ if it is still in the breast. Make sure you ask the Breast Care Nurse and/or your next Onc for an easy to understand explanation.
I have 3 friends who are in the same boat. All are late 60s or early 70s & have been diagnosed with bone mets in the last 18 months. All have been told it is inoperable and that they will be on tablets forever. They were also told that altho technically, it is 'terminal' - that theirs is 'slow growing' and will be treated more as a 'chronic condition' and that symptoms will be treated as they occur. Just make sure you tell them if you notice any changes anywhere in your body!
All the best for your ongoing treatment - good that you can go local. I hope your next Onc is better than the first one.
Just get out there and do whatever you like, to have the best life you can xx There are no rules. Just do what is right for you - and that includes having fun! xx
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Hey thank you
yeh I go to next appointment next week start tablets they are Letrozole and Palbociclib plus get bone injection and also nausea medication as read up on tablets just bit unsure of them causing sickness but suppose I will get there
I don’t look at it terminal I look at it as chronic disease as you live longer than years ago but wish they would promote metastatic cancer lot more as think people would b more aware of it
but yeh I’m goin to transfer to my hospital near me I can’t deal with rude people or think that there is no hope for you that is so wrong4 -
@Not_good_63_57, its pretty much standard procedure with denovo, i.e. cancer when first found has already metastasised to bones or organs, the aim is to prolong our lives as long as possible as it unfortunately incurable, I do agree that she should have explained it better for you though,. McGrath nurses àre available all over Australia although you do need to find one who specialises in Stage 4 cancer. Best of luck with your treatment, I also started out on pills only with a monthly denosumab injection for my bones as I was already osteoporotic. I've been on this road for 3 yrs now and am doing quite well at the moment and I still haven't had to have iv chemo. Just take everything one day at a time for now and try not to dwell on what ifs as they may never happen. xxxx1
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Hey thank you for ur kind words
yes this is all knew to me still getting head round it but not as stressed as wat I first was and that’s what I’m going to do is get on with life not dwell on it ... I call it a chronic disease now3 -
Dear Not_good_63_57,
You seem to have lovely positive attitude. You haven't shared your situation eg age, family etc. I hope that whoever you have in your life are supportive. Don't forget many people, including myself, are not aware of how your situation is managed and they may ask awkward questions, and mean no harm. Just interested and caring. Hopefully the oral drugs don't cause too much trouble for you. I'm taking Letrazole with no issues as yet. Wishing you all the very best.1 -
@Locksley Had chemo this arvo so feeling shitty, then I read this & had to not just smile but laugh 😆 So thank you.
My PET scan & biopsy didn’t show anything further than the breast & the liver, thank God so planned treatment went ahead as planned.
My 1st treatment went for 6 hours but thank goodness didn’t have too many unpleasant side effects, nothing I couldn’t handle with plenty of drugs, creams & a good sense of humor anyway! Today’s was done in 3.5 hours & went well. I’m now geared up with everything I need to attack any bloody gremlin that tries to take over my body in the next few weeks....hmmm at least I hope I am 🤪4
Hi