Disappointed and confused by the system
I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few...
Forum Discussion
Hi Summer,
Thanks so much for this message, and for the advice about the PM (I mean the personal message, not the poor fellow in Canberra). Why is it that there is so much we need to know but we always find out about it too late? I have bought a few books online as well but have found nothing that really explains stuff clearly - plus, people in the US and the UK have such different experiences. For instance, it took a lot of research to find out about the Oncotype DX test, and then to find out that in those places it is easy to get it done but as recently as October the Australian health authorities refused to put it on the Medicare schedule - so if you want it you have to pay $4000 or more. And my surgeon said it wasn't really going to help in my case but didn't explain why, although now I have realised it is to do with the size of the tumour and the number of lymph nodes involved, so it is a kind of "tick the box" thing as to whether it can help in the decisions about chemo.
I decided to be assertive and rang the Clinic where I am supposed to be seeing my oncologist, and yes, they had made an appointment for next week, but only then I find out that this doctor only works in the public system so I won't have him as my oncologist other than when he happens to get involved with my case. Not that there's necessarily anything wrong with seeing the registrars, but that's not what I have paid private insurance for over more than forty years. So maybe it's back to the drawing board and start all over with someone completely new!
Not sure how to put out a call to people in my area but it's a great idea. I guess I would feel much better if I had some more feedback about the local services.
Good to have your support, Summer, all the best to you.
Annski.
Thanks so much for this message, and for the advice about the PM (I mean the personal message, not the poor fellow in Canberra). Why is it that there is so much we need to know but we always find out about it too late? I have bought a few books online as well but have found nothing that really explains stuff clearly - plus, people in the US and the UK have such different experiences. For instance, it took a lot of research to find out about the Oncotype DX test, and then to find out that in those places it is easy to get it done but as recently as October the Australian health authorities refused to put it on the Medicare schedule - so if you want it you have to pay $4000 or more. And my surgeon said it wasn't really going to help in my case but didn't explain why, although now I have realised it is to do with the size of the tumour and the number of lymph nodes involved, so it is a kind of "tick the box" thing as to whether it can help in the decisions about chemo.
I decided to be assertive and rang the Clinic where I am supposed to be seeing my oncologist, and yes, they had made an appointment for next week, but only then I find out that this doctor only works in the public system so I won't have him as my oncologist other than when he happens to get involved with my case. Not that there's necessarily anything wrong with seeing the registrars, but that's not what I have paid private insurance for over more than forty years. So maybe it's back to the drawing board and start all over with someone completely new!
Not sure how to put out a call to people in my area but it's a great idea. I guess I would feel much better if I had some more feedback about the local services.
Good to have your support, Summer, all the best to you.
Annski.