BCNA's State of the Nation Report launched today

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Comments

  • iserbrown
    iserbrown Member Posts: 5,541
    No hate just annoyance of inference!

    Yes they need stats and yes the Ex-med program I'm participating in is to build up stats for further funding and rollout further afield!

    We all appreciate and understand the work BCNA does.

    Hits a raw nerve

  • Harlee
    Harlee Member Posts: 106
    edited June 2018
    I don't know what other people have been told - but nowhere have I ever read or heard that exercise will STOP a recurrence.
    Everything I have read or been told is that exercise has been shown to REDUCE THE RISK  of recurrence and that is what Kirsten wrote in her reply that has upset a few of you. 
    I can't imagine how heartbreaking it must be to have a recurrence and then to feel that you are being blamed must be a complete nightmare. 

    There is evidence that exercise will reduce the risk of a recurrence and that means LESS people will have a recurrence not that nobody will have a recurrence. Even if there was some magic bullet that could reduce the risk to 1% (and wouldn't we all be lining up for that??) - even at 1% that is still 1 person in a 100 or 10 in 1000 who will be UNLUCKY and have a recurrence. It doesn't meant that those people did something wrong or are to blame for their situation. 

    My oncologist was very upfront with this information - that all my adjuvant treatments and life style modifications (diet exercise etc) would REDUCE my risk of recurrence - never eliminate it.  It's difficult to give such a negative message in a positive way but he was able to inspire me to do as much as I could to try to reduce my risk while still preparing me for the small chance that I could be one of the unlucky ones.
    It saddens me that others did not receive the same information. 


  • melclarity
    melclarity Member Posts: 3,502
    Sorry my recurrence was not reduced by diet or exercise....oncologist verified as did Breast Surgeon. So be careful what you believe will reduce a risk when its DNA and not something we can control clearly as nobody would get it at alll. 
  • Harlee
    Harlee Member Posts: 106
    @melclarity I'm sorry I know this upsets you but I do believe that the exercise message is very important. 

    When we are speaking about the risk of recurrence we are speaking about the population risk - that is what happens to a group of 100, or 1000, or 1 million people. Currently we can't predict whether an individual will have a recurrence or not. We are getting closer but we aren't there yet. 
    For an individual you either have a recurrence or you don't. There is no inbetween - it's not like you can get a percentage of a tumour!?
    But for a group there is a percentage risk because you can measure how many per hundred have a recurrence. 
    If you have a group of 100 people with breast cancer who exercise and a group of 100 people with similar cancers who don't exercise there will be less people in the exercise group who have a recurrence - that has been proven.
    This means that SOME people in the group will have avoided a recurrence by exercising. It does not mean that if you exercise you won't have a recurrence because sadly there will still be people in the exercise group who have a recurrence - as you have experienced.

    This same principle applies to all our adjuvant treatments - radiation, chemo, hormone therapy - it has been proven that these treatments will reduce the risk of recurrence but none of them eliminate it completely. Otherwise, as you say, there would be no recurrences. 

    I understand that for you - your recurrence was 100% - it happened to you and nothing you did (and I know that you did everything you could) stopped it. But in a group of 100 people like yourself - some of them would not have had a recurrence and that is why we say that the risk is reduced. 

    I do wish it could be more more clear so that people like yourself don't feel that they are being blamed.

  • traveltext
    traveltext Member Posts: 253
    @melclarity could you provide a link to the study that supports your statement?

    "If you have a group of 100 people with breast cancer who exercise and a group of 100 people with similar cancers who don't exercise there will be less people in the exercise group who have a recurrence - that has been proven."

  • melclarity
    melclarity Member Posts: 3,502
    @traveltext you mean @Harlee who said that. 

    I  am pro exercise obviously @harlee hasnt read everything ive ever said. I exercise  so not sure what you are on about. The thing is you missed the point completelly. 
  • iserbrown
    iserbrown Member Posts: 5,541
    @traveltext it's not @melclarity making the statement 
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    @melclarity. We seem to go over the same thing time and again. 
    I know for sure that NO amount of exercise or diet could have prevented me from a recurrence. 
    My first diagnosis was when I  was  47. I had never had a mammogram. I was neither a young woman nor an old woman. To this day I  have never had a free mammogram.
    I have had Tamoxifen for 5 years and now have metastatic breast cancer.
    I am very fit. I used to run but don't now because of the damage done by AC chemo.
    My diet has not changed in years. I am very careful about what I  eat.
    So, @Harlee tell me what I  could have done to avoid a recurrence?



  • melclarity
    melclarity Member Posts: 3,502
    @Patti J yes i agree seem to go over the same thing but nobody listens. I agree with everything you said x
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  • traveltext
    traveltext Member Posts: 253
    Apologies @melclarity. @Harlee could you provide a link to the study that supports your statement?

    "If you have a group of 100 people with breast cancer who exercise and a group of 100 people with similar cancers who don't exercise there will be less people in the exercise group who have a recurrence - that has been proven."
  • [Deleted User]
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  • iserbrown
    iserbrown Member Posts: 5,541
    @Harlee
    Although no doubt that wasn't the intent you have upset some of us. 
    Please understand we all have differing views and experiences.
    All opinions are valued and accepted with good grace. 
    Exercise and diet is beneficial at all stages of life.
    Those that have suffered a recurrence and the rest of us having it hanging over our heads until such time as our 10 years of treatment has passed shouldn't be made to feel inadequate and thinking oh well it's my fault.
    There's enough to deal with at diagnosis 

  • Harlee
    Harlee Member Posts: 106
    Oh dear.
    I was hoping that I could explain myself a bit better but it seems I've just upset even more people. Truly that was not my intention. 

    There are numerous studies showing the evidence between exercise and reduced risk of recurrence. I will try to add some links to some recent articles.

    https://womhealth.org.au/conditions-and-treatments/study-finds-exercise-reduces-breast-cancer-recurrence

    This first link is a very easy to understand article discussing some of the studies from a Women Health group based in Queensland. 

    https://www.breastcancer.org/research-news/most-important-factors-to-reduce-recurrence-risk

    The second link is to breastcancer.org an American breast cancer group similar to BCNA. They have pages of studies showing the benefits of exercise. 

    http://www.cmaj.ca/content/189/7/E268.full?sid=0beff45f-b9da-4256-bda1-2a5819a11112

    The third link is to a study published in the Canadian Medical Association Journal referenced in the previous articles.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4622557/

    The final link is to a paper referenced in the CMAJ article. Be aware that unless you are used to reading scientific papers it could be a bit difficult to understand. Within this paper are even more links to further studies.

    The quote from @traveltext was mine - I was trying to explain that these studies relate to populations or groups of people and not individuals. The article I linked to mentions a number of cohort studies if you want numbers. 



    Patti J said:


    So, @Harlee tell me what I  could have done to avoid a recurrence?




    Sorry Patti but that's exactly my point. 

    You may have done everything you could have done. Currently nothing gives 100% protection - exercise, diet, and various treatments reduce risk of recurrence they do not make it zero. So some people who have done absolutely everything they could will still have a recurrence. 

    That's why we need to be careful with how this is presented so that people don't feel that they are being blamed. 

    Obviously I've failed with that... :-(

    To anyone who I have upset please do accept my apology. 


  • Patti J
    Patti J Member, Dragonfly Posts: 589
    Exercise is important no matter who you are: old, young, male, female, indeterminate.