BCNA's State of the Nation Report launched today

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  • iserbrown
    iserbrown Member Posts: 5,729 ✭
    Thank you 
  • nikov
    nikov Member Posts: 81 ✭
    Seems as though I wasn't the only person with the lack of support from the Breast Care Nurses. Not being able to contact my treating team directly, I had to go through the Breast Care Nurses every time I had a question and in saying that, it's whenever they had the time to get back to you or whenever they're not holidays. I was told that I "somehow dropped off their radar" and my name wasn't in their system, didn't know know what organisations we're out there re: BC Support until I opened up my laptop and Googled a whole bunch of things and 4 weeks post op my mastectomy I was told about the Berlei Mastectomy bra and the My Journey Kit. I get it, not enough nurses and heaps of patients or they're plenty of nurses but not educated in a sense of BC patients but it's already hard being first diagnosed that now you also have a lack of professional support. I requested to see a Social Worker to ask about benefits etc. She told me to jump online and apply for everything myself. I requested to see the hospital dietitian "sorry, you'll be waiting months" Requested to see the physio post mastectomy "sorry, she's booked out". I'm not having a go at Breast Care Nurses but I feel as though there needs to be more support surrounding them, in order for the patients to get more support
  • [Deleted User]
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  • melclarity
    melclarity Member Posts: 3,528 ✭
    I must admit I haven't been back to comment as have been taken back by a flippant comment of being unfair to only some men and women who have had a recurrence or having metastatic disease inspite of being fit. My Oncologist too said it was 'bad luck' that unfortunately, NO Diet, and no Exercise would have prevented it?? so I'm confused...
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  • iserbrown
    iserbrown Member Posts: 5,729 ✭
    I hear you both!  Unfortunately the inference is recurrence can be because of lack of exercise. 
    As I commented earlier, exercise is good but shouldn't be used against those that can't exercise.
    I guess we are all super sensitive and super aware. I have a heightened awareness of self because of breast cancer.  This is about us, real people, not stats!


  • Kirsten_BCNA
    Kirsten_BCNA Staff Posts: 57 ✭
    I am so sorry that you have taken my comments in a negative way, it is never my intention for anyone to think they should blame themselves for their breast cancer diagnosis or a recurrence.
    As I pointed out even those who are the fittest in their life can be diagnosed or have their cancer progress. 
    I only wish their was a silver bullet of treatment, exercise or psychology that would give everyone reassurance - but we are long way off that. All we can do is provide the latest research and information, and for each individual to do what is right for them in consultation with their medical team.
    Everyone's situation is so unique and I really appreciate the discussions.

    @traveltext I have lodged an inquiry around MRI access for males - MRI access for those at risk is part of our current discussions with Government as many of our members are facing out of pocket costs in this area - so we have asked for a specific response to your post.

  • JJ70
    JJ70 Member Posts: 983 ✭
    “We will not stop until everyone woman or man diagnosed with breast cancer receives the very best treatment, care and support possible.”    

    I love the confidence and beauty of inclusivity and audacity statement at the end of the report.      :#:smiley:

    I would love to see the national breast screening invitation age lowered from 50 to 45 and/or FREE from 40 actually advertised. It is such a HUGE misconception out there - that you don't need to worry about breast cancer until you're 50. Approximately 20% of BC's are found in women 40-49 (this is of course also a false low - how many BC's are found in women 50-51 who have their first mammogram? These of course, were growing before 50). 
    From BreastScreen Australia's review in 2009, there is a whopping 30% mortality benefit when screening women 45-49 (as breast density decreases around this age for many women). BreastScreen Australia recommended the invitation age be lowered to 45, but in over 9 years, the government has yet to make any change here.

    Just like BCNA, I will not stop until someone can show me some valid reason (other than $$) as to why this age group is not included in the invitation age.
  • [Deleted User]
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  • melclarity
    melclarity Member Posts: 3,528 ✭
    I think what the medical profession fail to see is, whether they are 'evidence based' or not, there are an incredible amount of people who are blind-sighted as was I, being told exercise will stop a recurrence, what will you say to the thousands more coming up exercising and still get a recurrence? because that's the reality. It is fine to put out the message to eat well and exercise....that's a GIVEN for ANYONE and ANY ILLNESS!!! it's NOT specific to Breast Cancer...instead all this does is instil blame in people. @Aggie my Breast Surgeon also said the same thing as did my Oncologist. Diet is actually the lesser investigated between the two, and all minority studies because they'd have to trial individual foods to see if there is any bearing, which currently they say there just isn't. As part of my rehabilitation the Specialists SAID - don't kill yourself with diet because the only function of it is to be balanced and healthy as for any other illness. I really don't think the message is correct at all. Lets be clear, I always exercised and I still exercise to the best I can due to quality of life zipped not thanks to BC but treatment. Oh well, that's unfair too? lol. 

    I also was told it was in the DNA and NO not just due to the BRCA Gene. 

    @JJ70 I agree this has been a long winded discussion on screening age, all the reports?? and stats?? are geared for people over 50. Again completely not the reality as Im sure if you did a poll even here!!! I happened to be getting mammos in my late 30's phew! lucky??? my first diagnosis was at 43 and 47 again....Breast Surgeons words? "Its impossible, yet it happened and no amount of anything was going to stop this happening. 

    There are so many things that need to be altered especially ignorance...not all STATS are correct or a true reflection of the reality of things at all. It is very easy for people never been through it to sift through all the information and make an informed comment, but its not the reality.


  • iserbrown
    iserbrown Member Posts: 5,729 ✭
    This really has hit a nerve, not just my post mastectomy nerve pain

    We are people not stats!

    Exercise will make us fitter to cope with treatment!  It won't alter our path of recurrence
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    Being very cynical... you can make statistics say anything!

  • nikov
    nikov Member Posts: 81 ✭
    stats are just numbers to get the government to approve what our requests are for our needs...more research more support etc etc and you ladies are right, we are people who are personally involved in this and I'm sure BCNA are aware of it but there needs to be numbers just so that the government can be like "oh look...numbers". 

    When it comes to diet an exercise, I haven't changed it during treatment or after. I was a really fit young woman growing up and have had to stop because of injuries so I found alternatives. To be honest, I haven't really been exercising since I had my prophylactic mastectomy 10 weeks ago. I know I won't have the fear of re-occurance of BC but I know that I am a much higher risk of my reproductive system and no matter what stats say, I'm making decisions based on how my body is. If I feel like exercising, I will, if I don't then I won't. If I want to change my diet, it'll be based on a personal choice and not because someone recommends it. 

    I don't know, stats are very generalised but each one of us are individuals and we just need to find what's best for us and our bodies. I mean, if it was up to me, I'd be lowering mammograms to the age 30 as I know lots of young women under the age of 30 being diagnosed with BC and even though our breasts are more dense, there needs to be some research to work a way around that.

    Anyways, please no hate on this post. I have no intention of upsetting anyone and this is just my personal opinion.
  • [Deleted User]
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