Time for a new treatment

Just refreshing muself about the original post and the subsequent responses on this question.  Have just received my Beacon and Inside Story at home and of course the Beacon is upfront and large and the Inside Story is small and something I get the feeling others really don't want to see.

I was actually somewhat angry that the covering note is asking for donations with all the pink bells and whistles attached whilst we get very little attention paid to those of use with advanced breast cancer.

Understand that this can all be very scary and that for those diagosed with early beast cancer I suppose it is even more scary and could be disheartening.  Unfortunately it is a fact of life and there is a large percentage with ABC who were once EBC - it has come back.  Therefore EBC people should be aware that a CURE is really the answer so that it does not come back to bit you.

The original idea of lobbying politicians was a good one but I know from experience from other issues how much energy this can take and if you are like me that energy is better spent on our families and ourselves.  However the letters should continue to go in.  You must remember that politicians change on a somewhat regular basis and the minister ond day is not the minister necessarily the next.  Unfortunately a lot of the information and cuases etc do not get passed on properly or fully as staff also change.

Thanks all for listening as needed an outlet to let off steam.

Love to you all

Jaci

Just refreshing muself about the original post and the subsequent responses on this question.  Have just received my Beacon and Inside Story at home and of course the Beacon is upfront and large and the Inside Story is small and something I get the feeling others really don't want to see.

I was actually somewhat angry that the covering note is asking for donations with all the pink bells and whistles attached whilst we get very little attention paid to those of use with advanced breast cancer.

Understand that this can all be very scary and that for those diagosed with early beast cancer I suppose it is even more scary and could be disheartening.  Unfortunately it is a fact of life and there is a large percentage with ABC who were once EBC - it has come back.  Therefore EBC people should be aware that a CURE is really the answer so that it does not come back to bit you.

The original idea of lobbying politicians was a good one but I know from experience from other issues how much energy this can take and if you are like me that energy is better spent on our families and ourselves.  However the letters should continue to go in.  You must remember that politicians change on a somewhat regular basis and the minister ond day is not the minister necessarily the next.  Unfortunately a lot of the information and cuases etc do not get passed on properly or fully as staff also change.

Thanks all for listening as needed an outlet to let off steam.

Love to you all

Jaci

Hi Amy I agree so much with what you are saying. I want to live my life but the problem is that after two years diagnosed everything has settled down and people forget about the diagnosis. I am ok with that as long as I still get support. I don't get any support now. I also found the stigma attached to the advanced stage so debilitating. I found women with earlier diagnosis being attended to so well in outpatients by the breast care nurse when I was told so little could be done for me since "the horse had bolted from the stable" that is what the breast care nurse told me. later I felt invisible in the waiting room as I waited to see the oncologist and surgeon as I witnessed the breast care nurse be so attentive to a woman who was receiving chemo. I feel the diagnosis is somewhat a death sentence and yet I am living quite well at the moment, or maybe I hide it well. I am the same as you it is in my bones and I live in fear re progression feeling it is only a matter of time. And yet I am still going ok at this stage. Why is there such apathy regarding those with advanced breast cancer. I couldnt believe chemo would not be an option for me because the cancer had already spread.  I would have thought it would still be good to try to kill the cells circulating in my body. Such a strange situation to be in and I feel for you as much as I feel for myself.

Melissa

sorry for spelling/gramma mistakes I am busy with my little-one

sorry for spelling/gramma mistakes I am busy with my little-one

Well done!! I am still here, I only get into Internet every 3 weeks or so, but please COUNT ON ME!!............we need all would need at some point to write a letter and sign it...the more signatures the better!!....And the Minister of Health MUST HEAR US!!!!!!!!!!!!!

LOVE AND PEACE TO ALL OF YOU MY DEAR FRIENDS!!

Good on yu Amy.  So proud of women like you.  I have secondaries (all be it only in the lymp nodes) so I should be jumping up and down too - just like you!!!!  Congratulations  XLeonie

Isnt it a great feeling when actually feel some one is listening. we will keep pushing.

Maybe a letter to the Minister for Health? 

Thanks for your post Michelle

I don't doubt that there is work going on - as you said unfortunately it is painstakingly slow.  We are fortunate to have clinical trials happening - I would like to see access to trials becoming easier in a country that is so widespread - I fear that many rural women do not get to access trials as easily as us city dwellers. I frequently look at the trials website - there is also a victorian one - http://www.cancervic.org.au/trials/ which often lists different trials also.  On the link that you mentioned - there are currently 39 open trials nationally listed.  It would be great to see more happening for women with triple negative disease and inflammatory BC.  

It goes beyond trials though to those working in the labs. I currently have tumor tissue being tested by a lab in Queenlsand (government) - it is assisting the lab to develop testing which gives more detailed analysis of tumor tissue and hopefully guides treatment decisions with more accuracy - it is in R&D phase and these scientists are reliant on NHMCR funding - they also have some funding from the NBCF.  Currently the testing that they are doing on my tumor tissue costs on average $10-15K per patient.  My Mum is actively fund raising in Queensland for fund to go directly to this research project. This type of testing may lead to more individualised treatment in the future rather than the statistical roll of the dice used currently.

As I said before - I believe it is a change in rhetoric that is required and a refocus of intentions on finding a cure.  So sadly your mother passed away in 1990 - 12 years later we still are no closer to a cure for stage 4 disease.  I am so happy that fewer women get to stage 4 disease but for those that do, we still have no answers.  

I am a part of the review groups and regularly read the research - you have to be informed to be your own best advocate.

Maybe by the time my girls are my age - there will be an answer. - I certainly hope so.

Amanda x