BCNA's State of the Nation Report launched today

Marianne_BCNA

HI all,
Here is the link to BCNA's State of the nation report which will be presented to government at Parliament House tonight. This report highlights the experiences of over 15000 women and men around Australia who were consulted over an 18 month period. 
We  have been doing some media this morning as there is quite a bit of interest in the report. Here's a link to our CEO, Kirsten Pilatti on the Today Show this morning.
Thanks to all of you who contributed to the report. We'll keep you updated with how it goes.

Marianne_BCNA

And a big shout out to @lrb_03 who did this great interview for us for the Canberra Times
Thanks @lrb_03! 

iserbrown

and a shout out to @Kirsten_BCNA - saw you on the tele this morning, Channel 9 - what a great advocate you are for us!!
Much appreciated by me and others

Jane221

Great report! Well done everyone at BCNA and to those who contributed their experiences, hopefully it will lead to further improvements and better outcomes for all affected by breast cancer.

Good on you too @lrb_03 for telling your story in the Canberra Times. I'm so glad to see lymphedema getting more attention, it's such a kick in the guts condition to deal with after the trauma of breast cancer and such an expensive thing to manage over a lifetime.

kmakm

Well done @lrb_03! Good on you for opening up to the press, not easy. And kudos on the sad pose under the tree at sunset. Love it!!   K xox

iserbrown

@lrb_03 Congratulations on being prepared to highlight the shortcomings in the ACT!  Good article

Harlee

I just read the report which was very informative.
However the one thing that really stood out to me (and made me both incredibly sad and absolutely furious) was to read that many people diagnosed with metastatic breast cancer felt that they had less support than when they were originally diagnosed! 
WHAT??????
Particularly the bit about even less access to breast care nurses??
Is there a reason for this? Are there special "metastatic" breast care nurses (obviously not enough of them?) Or is it because most of your contact with the breast care nurse is when you are originally diagnosed - most often with early cancer? I know that I've had 2 emails with my breast care nurse in the last 2 years but I'm 4 years out from diagnosis. If I have a question she answers it but otherwise I have no contact. 
I would have expected that if I had a recurrence I would again have lots of contact with her. Am I wrong in this expectation?

Kattykit

I have never been contacted by a breast care nurse since I was diagnosed with metastatic breast cancer in October last year nor been offered the services of one.

angg66

I also have not been contacted by a breast care nurse since I got diagnosed since 2016. In fact my oncologist basically told me not to call the BC nurse & that he was my first point of call. 

melclarity

I've had a recurrence, and the only time I would be in contact with a breast care Nurse was in the hospital for a lumpectomy, both times. Basically once you leave and heal, I never had contact with them. 

I also wanted to highlight yet again something said in the report....This is a disappointing finding considering the volume
of emerging evidence that highlights how regular exercise before, during and after treatment reduces
the severity of side effects and the risk of new and
recurrent cancers. Anyone I've ever known in my 7yr journey and had recurrences all exercised before and after 1st diagnosis including myself. If this were the case majority of people wouldnt get breast cancer ...why dont we just say regardless of any illness we need to exercise and eat well. I'd imagine there are millions of people who have had recurrences feeling let down after 'doing the right things' hmmm...

I had more assistance and help from my insurance company once I applied for my income protection, who provided an Exercise Physiologist and OT and also wanted to organise anything else I needed to help at home. The one thing NOBODY would help with was financial assistance. Thank you for raising the point, as many of us are financially ruined due to the treatments we endure that compromise quality of life and work capacity. 

iserbrown

Raw nerves!
Once in this predicament I felt like a square peg in a round hole. No financial assistance to be had. Lots of cumulative bills as we go along and the underlying concern every time due for review.
It's hard to out into words without sounding paranoid. 
Thank you to this forum and the opportunity to vent when needed.
Exercise is good but shouldn't be used against those that can't exercise.
Take care

melclarity

@iserbrown I agree there are many that cannot exercise due to the debilitation of treatment. Moreso though, exercise shouldnt be mentioned as a preventative of recurrence, as I am sure many people will verify. I wish it were that simple. Bit like taking tamoxifen reduces your risk of recurrence right??? not even that worked and doesnt in 1/3 of cases as documented by the NBCF. I want to know what you say to all those people who did all the RIGHT things to reduce recurrence and yet still? according to "volume of emerging evidence" we must all be wrong because we were told exercise, don't drink alcohol, don't eat this don't eat that and you'll be fine LOL. 

iserbrown

melclarity said:
Moreso though, exercise shouldnt be mentioned as a preventative of recurrence, as I am sure many people will verify. I wish it were that simple. Bit like taking tamoxifen reduces your risk of recurrence right??? 

Precisely! 

It's extremely unfair that we are to be lumped into oh exercise is the cure all!

The damned medication called Tamoxifen isn't a cure all either.

Before BC I took the occasional panadol now I feel like I contrubute to the pharmaceutical companies profits and found myself having surgeries because of Tamoxifen.  Grrrrr

Kirsten_BCNA

Thank you so much everyone for your comments and support of the Report.

In relation to exercise and recurrence - it is very important that we promote evidence based information. There is no doubt that the evidence shows the benefit of exercise and reducing the risk of recurrence however the real challenge with any evidence is that it does not mean it is 100%. So yes some women and men who are the fittest they have ever been may go on to have metastatic disease and that is so unfair when you are doing everything to look after yourself.

The State of the Nation really will allow us to advocate for metastatic breast cancer services. It is just not right that they have less access to breast care nurses. I am really thrilled that we are working closely with CNSA and the McGrath Foundation to increase the number metastatic breast care nurses we have around the country.

There is so much to do, but we now have to work with Governments, service providers and health professionals to chip away at the right changes for our members. Just one recommendation at a time!

Thanks again for all your support

iserbrown

No worries - full support here!  The acronym CNSA - what does that stand for?

Giovanna_BCNA

Hello @iserbrown
CNSA is Cancer Nurses Society of Australia.  There was a conference last week in Brisbane which Marianne and Rosie attended.  Hope to have some feedback soon that I can share with online members.