Update on data collection on secondary breast cancer
Hi all,
A few weeks ago some of our members in the Online Network were discussing concerns about the fact that data is not routinely collected on secondary breast cancer, the way it is when women are diagnosed with early breast cancer.
For those who aren't aware of this issue, when a person is diagnosed with cancer (including women with early breast cancer), their doctor must inform the Cancer Registry in their state and territory. The information collected in the Registry helps governments keep track of the impact of cancer in our communities, and helps in the planning and funding of services and support.
However when a woman is diagnosed with secondary breast cancer, this information is not required to be collected, leaving a massive gap in our knowledge and understanding of secondary breast cancer.
For many years BCNA (and a number of other groups) have argued that information should be collected on secondary breast cancer. So following on from the recent conversations in the network, we thought that it was time to compile an update on some of the behind the scenes work that has been going on, to keep everyone informed and up to date with the latest developments.
Work on collecting data on secondary breast cancer has been slow, but there have been some small steps forward.
If you would like to read this update visit our news page on our website. I hope you find it interesting.
We'd also be interested to hear any comments you may have on this issue.
Best wishes,
Michelle
Comments
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I find this lack of reporting quite worrying. Are the statistics we get given from America and elsewhere, or are they just incorrect?
My main concerns are that I have been through two ops, chemo and radio. and I would like to know correct data on the likelihood of secondaries. Is that why the doctors aren't forthcoming on information, because they don't know?
Thank you BCNA for being pro-active about this very important issue.
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I find this lack of reporting quite worrying. Are the statistics we get given from America and elsewhere, or are they just incorrect?
My main concerns are that I have been through two ops, chemo and radio. and I would like to know correct data on the likelihood of secondaries. Is that why the doctors aren't forthcoming on information, because they don't know?
Thank you BCNA for being pro-active about this very important issue.
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Thanks Michelle, yes what you said makes sense and I appreciate your explanation. It still sounds like this will give us more information and will be a positive step in our understanding of BC. Kylie x
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Thanks Michelle, yes what you said makes sense and I appreciate your explanation. It still sounds like this will give us more information and will be a positive step in our understanding of BC. Kylie x
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Hi Francesca,
My name is Annie and I work at BCNA.
Have you heard of BCNA's Hope & Hurdles kit? It's a free, comprehensive resource for women with secondary breast cancer. We have just updated the resource which now includes some information for women who were diagnosed with secondary breast cancer as their initial diagnosis, which you may find useful. There are also a number of optional booklets you can order depending on your individual circumstances. To order a free kit, please give us a call on 1800 500 258.
As for the data collection on secondary breast cancer, there's still no update, but we'll definitely post an update on our website if one becomes available.
Annie
As for the
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Hi francesca,
Just to let you know that I also was diagnosed with secondary bc right from the start
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The report showed the trails finishing in June 2013. I am passionate about ABC having at least numbers to work with.. We should not be allowed or expected to remain invisible.
"NBOCC has also sponsored the establishment of trials in Victorian and Western Australia to find ways to actually collect data on secondary breast cancer by cancer registries. This is also more complicated than it sounds, as it requires identifying which health professionals must report a diagnosis of secondary disease, the best way for them to do this, and following up on any missing pathology information. The current trials are due to finish in June 2013."0 -
The report showed the trails finishing in June 2013. I am passionate about ABC having at least numbers to work with.. We should not be allowed or expected to remain invisible.
"NBOCC has also sponsored the establishment of trials in Victorian and Western Australia to find ways to actually collect data on secondary breast cancer by cancer registries. This is also more complicated than it sounds, as it requires identifying which health professionals must report a diagnosis of secondary disease, the best way for them to do this, and following up on any missing pathology information. The current trials are due to finish in June 2013."0 -
Thank you for providing info re data collection for secondary breast cancer in Australia. I am saddened and very disappointed that more than 12 months since your update, this data still doesnt exist. Young women with young families are dying, one by one due to ABC...we are forgotten about and not listened to.
In relation to the collection of secondary cancer statistics, the BCNA update above says that "current trials (in Victoria and WA) are due to finish in June 2013". Can we please have an update in relation to the progress of these trials? I urge BCNA to strongly advocate on our behalf to push this matter ahead, and report back to us on where things are at. Without decent statistics, services cannot be planned appropriately to meet our needs and funding will continue to be inadequate.
I agree with comments made above by Pink66 and in particular MandaMoo...we are living with ABC...we are here....we are not invisible....we deserve to be heard!
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It would be also great to know what percentage of funding (both BCNA and NBCF) goes towards secondary education, support and research.
Within our support group, we have a couple of other points we'd like to get information on, and are having trouble getting.
1. What % of ABC patients suffer depression. We have stats for this for EBC, what are they for ABC?
2. What % of EBC patients will develop ABC over the course of their lives, and what's the average time to secondary diagnosis.
3. What % of patients present with mets at diagnosis?
No amount of investment in EBC research and preventative measures will keep us alive, so we need to first start collecting this data, if it's not already being collected, in order to know where to invest.0 -
It would be also great to know what percentage of funding (both BCNA and NBCF) goes towards secondary education, support and research.
Within our support group, we have a couple of other points we'd like to get information on, and are having trouble getting.
1. What % of ABC patients suffer depression. We have stats for this for EBC, what are they for ABC?
2. What % of EBC patients will develop ABC over the course of their lives, and what's the average time to secondary diagnosis.
3. What % of patients present with mets at diagnosis?
No amount of investment in EBC research and preventative measures will keep us alive, so we need to first start collecting this data, if it's not already being collected, in order to know where to invest.0 -
I also posted last year regarding this. I do not have ABC but I think this information is essential. Our statistics are on 5 year survival which is fairly meaningless when so many of us are young parents.
According to most American sites approx 30% of EBC will eventually progress but we need to know exactly. Skewed, feel-good statistics are no help towards reducing and acknowledging progression.
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So from reading all the previous comments and in particular the very first post a doctor only has to report EBC, do they just assume that anyone who ends up with ABC has already had EBC and so therefore is already on the list????
i was diagnosed March 2012 at aged 41 with ABC, never been diagnosed with any other form of cancer so I'm guessing that means I'm not on their list therefore I don't exist!!!!!!!!!
Its about time that we were recognised and included in the statistics so we can get the much needed funding to find a cure for us. Sure I feel sorry for those with EBC and what they go through but really they don't have a clue what we live with every day.
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Talking to a few of the girls after our support group meeting today, it just seems that it's all too scary for anyone to think about and talk about. ABC doesn't have the glamour and glossy good new stories that EBC does. Don't get me wrong, EBC is not easy, but many EBC stories don't include anything but surgery and recon. We live with never-ending chemo, RT and evil hormone therapy.
Amanda was right, it seems like they sweep us under the carpet and wait for us to die. Easier than finding a cure. Is anyone from BCNA even reading this?0 -
Cancer is scary for all of us. EBC and moreso for ABC ladies. So let's stop sugarcoating and get the facts right. Our friends with ABC need to be heard and accounted for. This cannot be done while the numbers are not being compiled correctly. There will be minimal support for ABC if there is apparently not many out there presenting with it. WE know there are more out there than the statistics show and they need to be accurate for all of our sakes. Databases need to be updated and entered properly. Lets give our ABC ladies the support that they need.
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