Representing women with secondary breast cancer

Maxine's picture
Posted by Maxine in BCNA, on 26 Nov 2013, 02:22PM

A few weeks ago I had the wonderful opportunity to represent BCNA members at the European Society of Oncology Conference on Advanced Breast Cancer in Lisbon.

This conference meets every two years to set international guidelines regarding the treatment of advanced secondary breast cancer, (known in Australia as secondary breast cancer).

There were 1,000 delegates from 71 countries who came together to listen and consider presentations regarding the latest trials and evidence about what is the best clinical approach to treating those whose cancer has spread to other parts of the body.  It was very reassuring to see so many people working so well together to reach agreement on the best treatment approaches.

I was invited and supported by the European Society of Oncology to participate in the six member organising committee for the patient advocate program.  It was so good to see 68 patient advocates from 49 different organisations in 25 countries around the world participating.  Advocates representing the voices of women who have secondary breast cancer was considered a very important part of the guideline development.

The patient advocate sessions were really active.  I was very proud to share information about the work BCNA does to support women with secondary breast cancer particularly about our key resource, Hope and Hurdles.  There were many common themes from patient advocate organisations about dealing with secondary breast cancer.  Themes included; cost of treatment, the management of the side effects of treatment, the importance of good and honest discussion with treating doctors and health professionals and the importance of involving patients and family in treatment decisions.  It was interesting that many countries do not have cancer registries and those that do, like Australia there was an agreed need for better data collection on secondary breast cancer. 

With patient advocate organisations from around the world there was obviously a great variety of health systems which greatly influences access to treatment and access to new and expensive drugs.    For example the patient advocate organisation from the Philippines said one of their problems was that patients are not being cared for by an oncologist, let alone a breast specialist. 

In summary a great event with all 1,000 participants at the conference dedicated to improving outcomes for the complex and diverse challenges faces by women with secondary breast cancer.  

~ Maxine

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Comments

shereejoy's picture

Does Australia currently have this registry for secondary breast cancer?

Lisbon Conference

ejacinta's picture

great to have a representative at this conference. Will there be a space where you share papers and longer reports?

thanks. Jacinta

Umm....

francesca_maree's picture

Maxine, thanks a for representing us "ugly sisters" (that's how we feel) with secondary breast cancer at Lisbon, but there is no such register in Australia. You might be surprised to find out that if you request stats on secondary breast cancer, such as how many of us are living with the disease, what's our average age, how long we live for, etc etc, that nobody can give you an answer, because those stats are not just kept in Australia.
The Hopes and Hurdles pack is a great resource, (the previous version that I received, however, was not... It pictured an elderly woman on the cover and talked a lot about dying) but that's really not enough. It doesn't scratch the surface.
We know that 7 of us die every single day in Australia, but that seems to be the only statistic collected. Swept under the carpet with a wash of pink "early detection is the key" fabric softener that nobody hears about, and we - the ones that are dying - think that nobody cares about us.
It's much prettier, and "pink-er" to talk about success stories; those that were lucky enough to be detected early and now be free of disease. What about those of us that were young when diagnosed with stage 4? No early detection for us. And those that were detected early, did everything right and STILL go on to develop stage 4 cancer with no rime or reason but worst possible luck. This early detection mantra makes those of us who are dying from the disease think we've done something wrong. Has anyone ever considered that?
Please campaign to genuinely represent and collect stats on Secondary Breast Cancer.
There's no way we can even get close to finding a cure until we stop ignoring us "ugly sisters" and acknowledging that we exist by collecting data.

Data needed

Maxine's picture

Hi Francesca
Completely agree with you about collection of data on secondary breast cancer. Sorry if the way I wrote about it gave a different impression. As you know Australia has great registry data but does not routinely collect data on advanced cancer. Some of the countries at the concerned don't even have cancer registries. Which was the point I was trying to make.
We have been advocating for some time to have data collection on secondary breast cancer. Cancer Australia is currently undertaking a pilot study on the best way to collect data on secondary disease. It is so important as we don't even know how many women are living with secondary disease. I really wish you did not feel like you are the ''ugly sisters'. It is certainly not the way we think about women with secondary breast cancer.
Will keep everyone updated on Cancer Australia trial. Best wishes, Maxine

francesca_maree's picture

Thanks for replying Maxine
I thought that might be the case, that the little bit we're doing in Australia is more than most countries are doing. That's incredibly sad and worrying.
We still do have a long way to go in Australia, though. BCNA included. You may not think of us as the ugly stepsisters, but that's exactly how we feel. I'm not just talking for myself here, either.
Recently I was invited to the upcoming Melbourne Forum, confusingly named Living Well Beyond Breast Cancer in some places, and Living Well WITH Breast Cancer in others. I called BCNA to clarify, and they advised me that it was really aimed at people who have had early BC, as with just about everything...
While it's important to support people who've had breast cancer and are now free of it, why is it so often that this aspect is focused on - across the board - and a huge community and "badge of honour" mentality built around it, while those of us really suffering, living and slowly dying from this disease are left feeling excluded?
I'm positive this is not intentional, but it's very real.
We have our own community, and try to support each other as best we can, but we keep losing people and it's not only distressing, but when we lose amazing campaigners like Amanda, we lose momentum, and we have a duty to keep the momentum going in her, and everyone else we've lost's honour. Some official support wouldn't go astray.

Amy's picture

I'm hoping too that you will be able to share with us in more detail what came out of the conference - eg. was there any news on new treatments?  What are other countries doing to advocate for secondary breast cancer?  Us ladies with ABC do feel we are often ignored - sadly, this does seem to be the reality.

 

perfectly said

ejacinta's picture

hi Lovely,

i agree.

hope you are doing ok with the lead up to christmas.

xxx

 

shereejoy's picture

Totally agree with you there any :(

shereejoy's picture

There are a few of us trying to pledge a difference in Amanda's honor if anyone would like to help?

Deb F's picture

I totally agree ladies. While I'm happy for the ladies who will live long and prosperous lives, what about us? I'm a little over the whole early detection thing and the pinkness that is October. Support is a wonderful thing, if you can get it. I suppose as a person with abc I just want some answers.

Celbird's picture

I too am looking forward to hearing what came out of the conference ie are there any new treatments on the horizon? What changes (if any) were made to the international guidelines for the treatment of secondary breast cancer? What agreements/recommendations were made (if any) to improve outcomes for the complex and diverse challenges faces by women with secondary breast cancer?

Keep feeding us with information BCNA, to help us feel valued and not forgotten about :)

Advanced breast cancer

Juliamary's picture

I agree with the other posts. Those of us with ABC and know we are dying often feel left out of the pinkness. Agreed that detection and treatment have come a long way in the last decade,( prevention needs a nudge along ) but who wants to hear about the ones that feel they have failed? We did everything we could at the time of first diagnosis but it was not enough and now I hear my oncologist say that there is nothing new on the horizon and has not been for a long time.
There must have been some hope that came out of this conference,


 

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