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Thea's avatar
Thea
Member
13 years ago

Secondary breast cancer data collection

Good Morning,

You may have seen previous discussions in the online network that data is not routinely collected on secondary breast cancer in the way it is when women are diagnosed with early breast cancer.

ABC radio and TV are running a story today featuring BCNA CEO Maxine Morand and BCNA member Amanda Rynne advocating that data on secondary breast cancer needs to be collected.

You can listen to ABC’s ‘Strategy to collect cancer data’ story.

Collecting data on cancer is an important process that enables governments to understand the number and characteristics of people diagnosed with cancer, including where they are located, the type/s of cancer they have been diagnosed with, and other relevant information.

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.

This information is crucial for planning and delivering services in an effort to meet the needs of those diagnosed with cancer.

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.

BCNA, along with a number of other groups, has lobbied for information to be collected on secondary breast cancer for a number of years.

If you would like to learn more about the situation on secondary breast cancer data collection you can visit our News item webpage to read an update we published in July.

I hope you find it interesting.

Warmest regards,

Thea
 

14 Replies

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  • Jabulani's avatar
    Jabulani
    Member
    13 years ago

    Perhaps this is why they claim that survival rates are improving because they only count the first five years and do not look at the long tail of this disease.  I was diagnosed with mets 4 weeks after I celebrated 10 years disease free.

    this sounds so important to be done!

  • Sony's avatar
    Sony
    Member
    13 years ago

    I couldn't agree more Suzieq Had Mammogram and Ultra sounds every year and told there was denseness there or scar tissue, it was only when my gp decided to get a bioposy done that we discovered breast cancer and then they didn't get it right as they said low grade cancer, it was only when I went to Wesley Hospital in Brisbane to have Op., done that it then became an agressive one, then everything went down the track for treatment of.

    Regards Sony

  • Pink66's avatar
    Pink66
    Member
    13 years ago

    I am extremely keen and interested in this subject. I find it hard to believe that I counted when my EBC was diagnosed in 2004 and now I do not count anywhere until I die !!!

    Well I have so many questions, and want to help to gain a better understanding about the symptoms, and treatment and positive assistance.. At the moment it all seems to be based on what your oncoligist has seen or heard and if you are lucky to have an experienced bunch of oncology nurses.. But it is near impossible to find collections of information on stuff to help get you thru..

    Please please please count me in if at all possible.. I am happy to share any and all information that may help me and others with ABC

    I am lucky that I had cracked a rib (and no it is not part of the cancer lol) and had a longterm cough and chest infection that inspired by specialist to "eliminate" stuff.. and it came back on my 8th anniversary as bone and lung ABC.. I thank my lucky stars.. I have had the chest infection on and off for years.. and I am not surprised the cancer has set up shop in there ..

    but the cough is now gone and the rib is repaired.. so I am back to zero symptoms.. without this happening, i just know it would have been see you in 12 months and then possibly again.. the only real idea i had that anything was wrong was that i kept getting colds and bugs and loosing my voice and could not clear it.. and was just generally unwell.. no real indicator of anything out of the ordinary at all.. as i have a very busy job.

    I crave positive and informative information to assist me in my journey..

    thanks for getting this on the table..

    regards, Sharon

  • Pink66's avatar
    Pink66
    Member
    13 years ago

    I am extremely keen and interested in this subject. I find it hard to believe that I counted when my EBC was diagnosed in 2004 and now I do not count anywhere until I die !!!

    Well I have so many questions, and want to help to gain a better understanding about the symptoms, and treatment and positive assistance.. At the moment it all seems to be based on what your oncoligist has seen or heard and if you are lucky to have an experienced bunch of oncology nurses.. But it is near impossible to find collections of information on stuff to help get you thru..

    Please please please count me in if at all possible.. I am happy to share any and all information that may help me and others with ABC

    I am lucky that I had cracked a rib (and no it is not part of the cancer lol) and had a longterm cough and chest infection that inspired by specialist to "eliminate" stuff.. and it came back on my 8th anniversary as bone and lung ABC.. I thank my lucky stars.. I have had the chest infection on and off for years.. and I am not surprised the cancer has set up shop in there ..

    but the cough is now gone and the rib is repaired.. so I am back to zero symptoms.. without this happening, i just know it would have been see you in 12 months and then possibly again.. the only real idea i had that anything was wrong was that i kept getting colds and bugs and loosing my voice and could not clear it.. and was just generally unwell.. no real indicator of anything out of the ordinary at all.. as i have a very busy job.

    I crave positive and informative information to assist me in my journey..

    thanks for getting this on the table..

    regards, Sharon

  • suzieq's avatar
    suzieq
    Member
    13 years ago

     

     

    As mammograms only pick up 50% of breast cancers and breast scans the same (77% chance of picking up cancers if you have  both) then why aren't women at risk sent for MRIs that pick up 100% of breast cancers?  You can do your knee in playing footie and be sent for MRI but not so for breast cancer. In America if you have "dense" breasts or family history or "at risk" you are routinely sent for MRIs.  Why are we so backward here in Australia?  Having "dense breasts" is a real risk factor for women.  How many women are actually told they have dense breasts?

    The Mayo Clinic in America has developed a new immaging machine using Gamma Rays (no more squeezing breasts between two sheets of glass!) that is picking up 4cm tumors in women who have just had mammograms.

  • ejacinta's avatar
    ejacinta
    Member
    13 years ago

    Hi kathleen- i'll be thinking of you- waiting is hard- here's hoping there isnt any growth. I had a similar situation- and it turned out no new growth. but it's so tricky isnt it. You dont want to over react- and you dont want anything to grow. Good luck.  Jacinta

  • KathleenT's avatar
    KathleenT
    Member
    13 years ago
    Bridget WHAT a fantastic idea! I think that for those of us who have secondary somewhere, sharing of experiences and collecting information is a great and positive step forward, towards better understanding of the disease. As U write, I'm getting closer to an oncology outpatient appointment thus Friday; brought forward from March next year, because I have been feeling pain in the area. Then I'm off interstate to spend Christmas with my mother and sisters. Trying not to anticipate a negative result. Regards Kathleen
  • Bardoe's avatar
    Bardoe
    Member
    13 years ago

    Hopefully my suggestion fits within the drive for the additional data collection, but I was hoping that BCNA would consider collecting women's experience of symptoms prior to or during diagnosis of secondary BC cancer?

    As someone diagnosed with early stage bc (in 2010), I understand the fear and anxiousness we all feel regarding the dread of this disease possibly coming back.   But when i speak with my doctors or go online,  its impossible to find a comprehensive list of symptoms or tests that would help us know if there is something happening. 

    It seems to be up to our GP's (& their experience) to decide whether we are paranoid about every pain, symptom, cough, head ache etc or whether there is something more to be investigated and how long before we should  consider a symptom as benign or problematic and then following up with the GP?

    I believe that it would be extremely valuable to collect prior symptoms information, (although I understand the need for sensitivity as I can only imagine the distress of a secondary diagnosis.)   Any of the following would be helpful? 

    What kind of pain & where, did you experience and for how long before following up with a Dr?

    What other symptoms, changes or feelings of unwellness - described?

    Coughs, breathlessness, swelling, stiffness etc.

    Maybe this could be a BCNA collective and a summary published if there is support for this?

    Thanks for reading,  Bridget

  • KathleenT's avatar
    KathleenT
    Member
    13 years ago
    Thanks for all this information-it's great. I would like to be involved in any survey/data collection about our experiences with breast cancer; concerning our age, family history, living location when diagnosed, etc. if any know how we go about "putting up our hands", please let's know. Have a wonderful Christmas and new year everyone! Regards Kathleen