Take the Fright Out of Breast Cancer™

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    Excellent idea .Wildplaces.

    Mods, thanks for posting the links to show that fear is a big issue for many people when it comes to being checked for bc and advancing to the many treatments.

    We certainly all understand fear here and mainly we were against you using a kids' fun day to get this message across, since kids have enough fears as it is. If you had changed the banner font and alteredthe title to: Take the Fear Out of Breast Cancer then you'd have further distanced the campaign from Halloween. Perhaps next year.


  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    The articles posted identify psychosocial factors and yes, some of them aim to directly assess fear - in a qualitative yes/no survey style - since measurement scales for fear are complex.

    The bottom line remains fear, by itself, is not the root cause (even in delaying diagnosis) and in that sense oversimplistic and dismissive of those for whom the fear is intense and absolutely justified.

    The discussion does it take courage to conquer fear is for another site, another time...

    I am done as I have said my peace.

    I am grateful for this community. 😉🌷

  • Sara536
    Sara536 Member Posts: 7,032
    edited October 2017

    Thank you for the above explanation. I agree that many women and men may be fearful of bc screening or of seeking help when they suspect breast cancer, whether it be fear of the disease or fear of doctors and health systems or fear of having inadequate health coverage. But, can you explain why associating breast cancer with Halloween, our popular scary holiday, will do anything to allay the fears? I can see it causing fear among kids and young people as well as making them afraid of people with breast cancer and seeing them as ghoulish.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    It seems like the collective is always trying to find a correlation on behavior. It is always blaming the victim, whether it is eating french fries, having a high bmi or drinking alcohol. It is like you think people can control whether they get breast cancer or not. If there is anything to explain it is it doesn't matter who you are, how you live your life or how you eat, breast cancer can strike. Many people no matter how diligent they are can be diagnosed at any stage of breast cancer. This catching it early is just a way to try to alleviate fears. In my case, mammograms are almost useless yet I still get one once a year. Kind of a one size fits all.

    Unless you have been through this you can't understand.

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Like the other 7 that don't get cancer don't eat french fries and drink. Like they are perfect, and we aren't.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    I should add most people with early breast cancer have no signs of the disease. I find it hard to believe there is a sizable group of people with breast cancer ignoring symptoms. Spend the money on better treatments or a cure.

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Living Eight Years On Chemotherapy

    Breast Cancer? But doctor....I hate pink!


    http://www.butdoctorihatepink.com/


  • kathindc
    kathindc Member Posts: 2,042
    edited October 2017

    Is it me, but I thought the numbers were rather small in the cited links. Plus there were other factors involved.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    marijen,

    Ann, of But Doctor, I hate pink... Was a very active bco member at one time. Some of us still remember her or are in touch via other social media

  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    Wow, Mods, did you think I would not follow those links? You've certainly dug yourself a deeper hole.

    The studies of Chinese women and African-American women in San Francisco actually found what I mentioned earlier: less delay with higher levels of fear.

    The first UK study and the Iranian study don't support your thesis, and I'm not sure how it makes sense they were included. The second UK study and the Japanese study list fear as one of many factors, but it is nowhere identified as the most important one. In the Turkish study, 40% of women did delay seeking care, but although the statistical description in the abstract is odd (I cannot link to the full article - that's not exactly a major journal) , fear is once again not listed as the most important factor.

    Finally, why in the world would you include a link to something about fear of recurrence? These are women who know what they're up against, and if you decide you need to "Take the Fright Out" of their experience, then you are once again - as we have all been saying - belittling their emotional responses. That paper is not even really a "study" so much as an evaluation of the use of an instrument to detect distress. Detecting distress is fine. Helping people deal with distress is fine. Implying anyone can or should "take the fright out" is frankly demeaning and offensive.

    Any of you following this thread, I encourage you to click on those links, especially the ones to the studies of the Chinese women and the African-American women in San Francisco.

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Really. That's something. I'd like to read the book. I came acrossed it by accident

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2017

    I was taken aback by the list of articles posted by the Mods in "defense" of their concept, too! I clicked on a couple...not impressed as valid reasons for this campaign.

    I realize that this is an international forum, and that bc is not restricted by borders. I do know that there are members from Japan, and Turkey and some of the other countries of "reference"...but those numbers are extremely low compared to the populations who will be most impacted by the "trivializing" of bc campaigns such as this one. I believe the overwhelming majority of people who reach out to bco as a source of support and info are not, and likely never will be, from the countries where the bulk of those "studies" were done.

    The stated purpose of this entire, (and still offensive) campaign is to raise funds for the website. So how is trying to justify their theme using cultural biases in countries where the population likely doesn't access bco very much, supposed to be valid?

    Sorry Mods...not buying it. "If it looks like poop, and smells like poop...it's poop".

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    The idea of putting so much money into this website is unconscionable, especially when it's very likely a sympathetic IT company would do this job as part of their corporate responsibility program for free.

    Imagine if we were offered the choice between spending $5 million on updating this website or calling for submissions from 1000 mets people offering them $5000 each towards their expenses? I know which I'd choose.


  • Tara17
    Tara17 Member Posts: 386
    edited October 2017

    trveltext --i suspect that like with a lot of non profits, I suspect that a chunk of the 5 million dollars will go towards salaries of people employed by BCO. It doesn't take five million dollars to update a website like BCO! This isn't a site like uber with multiple moving parts. It's an insult to our intelligence in this daY and age of technology that the campaign states that this money is for the website . Mods, lets have transparency regarding what this money is being ear marked for . How much of this money is budgeted for salaries etc ?

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    Don't forget about all those "studies" trying grasp statistical correlations related to breast cancer. It is a huge expensive business, and frankly I think it is a way to explain away risk factors and tell the masses how they can manage their cancer risk. So let us walk at lunch time and feel better about ourselves.

    There are so many variables and to come out with something like I just read, BMI in the overweight or obese range strongly correlates to getting BC. Half the population is overweight so wouldn't you expect half the people with BC to be overweight.

    I really think if I get a recurrence I am blaming it on the frustration and stress I get from reading these ridiculous studies.

    Where are people getting their education and writing these articles? If we had the answers we would have a better shot at stopping cancer.

    Is anyone the least bit suprised that 40% of postmenopausal woman with BC were overweight at diagnosis? Gee I guess my bmi of 21 puts me in the 60%.

    I do want to also say that BCO does have alot of valuable information and I appreciate that even though sometimes I get a bit angry.

    The money should be used for research and gathering valuable data, a better job needs to be done making sure money is not squandered on so called prevention.

    I think just about everyone knows a healthy diet and lifestyle is going to help their overall wellness, it doesn't prevent cancer.

  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    so we have a bunch of studies that told us pretty much what we already knew - people are scared to go to the dr and hear that they have or may have cancer. Wonder how much money went to fund all these studies for information we already had. This is not new news! A campaign to 'take the fright out of breast cancer' will not change this.

    There are people who are proactive and prefer to catch things early when unusual symptoms of any type show up and then there are those that will avoid going to the dr at all costs because they are fearful of hearing the c word. You can educate people on all the symptoms til you're blue in the face and it still won't make a difference for the ones who prefer to stick their heads in the sand. It's just the way it is.

    I was talking with a guy I work with who lost his wife to metastatic melanoma in his 40's, his mom to breast cancer and his mother in law to pancreatic cancer. I relayed to him the 'take the fright out' campaign and the reasons behind it. His response? If you're not scared shitless by a cancer diagnosis of any kind there is something wrong with you. There is almost nothing scarier - for both the one diagnosed as well as their loved ones. If someone takes the time to participate in this 'take the fright out' campaign and their newfound education on BC doesn't scare them to death they need to do more research on it. Slash, burn & poison are the treatment options and none of them come with a guarantee. UNTIL THERE IS A DEFINITIVE CURE THAT ISN'T WORS THAN THE DISEASE, THE FRIGHT WILL ALWAYS BE THERE! This is my 4th go round with the C word and I agree with his assessment 100%.

  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    Lula, actually follow the links and read the studies. In aggregate, they DON'T come to that conclusion. It's a factor that comes up in some of the studies, but basically BCO has listed some qualitative studies looking at delayers, and then a bunch of stuff that's not even relevant to their thesis. Unless this is a fundraiser for breast cancer education in Turkey (and it's not), they responded to the request for background information with - at best - sloppy analysis. Honestly, it's as if they tasked an intern with "Hey, go look on Pubmed and find some things we can list to justify this."

    But other than that point, I agree with you 100%. Deep-seated cultural reasons lead some people to avoid medical care because they're afraid of the identification of disease and the healthcare system (this is NOT just for cancer, and in the US it has relevant historical basis), certainly some people use denial as a major coping mechanism, and some people hold fatalistic (and often self-fulfilling) beliefs that the worst will happen anyway. An example I've seen is people who have diabetes whose parents lost limbs because of the disease. A fun campaign to "Take the Fright Out" is no way to address any of these issues. I am highly skeptical that a website with "cancer" in its name - which people have to actively seek out - is an effective way of reaching and helping any of these groups, although there are probably medical anthropologists who look at that kind of thing. I have a friend who does that kind of work (not with these specific questions), and she'd know where we could get that kind of information.

    And I'd agree with you more than 100%, if that were possible, that people should be afraid of cancer. Two of those studies they listed showed that women who were more afraid were less likely to delay seeking care.

    That's the part that galls me the most. Two of those studies are lend support to the suggestion we should be telling women to be MORE afraid of breast cancer.



  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017
    Anthropology came up...and it made me wonder?

    Would anyone successfully market a campaign:

    "Take the fright out of penile cancer!"

    Yes? No ?! Why not??😊
  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    Wildplaces - Don't think so. And, what color would a compaign to 'take the fright out of penile cancer' choose?

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017
  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    Travel, I was thinking purple, but blue is a good choice. I don't even have to close my eyes to picture those fund raising walks and runs.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017
  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    https://catsncancer.com/

    "Monster terrify. Am I a monster?"

    Sandra Spivey - metastatic breast cancer - on being told to tone down her speech not to "terrify"...over 200 chemo infusions and countless hormone pills...how do you tone that down

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited October 2017

    Just to chime in with another reason someone might delay going to the doctor: Fear of the expense involved with treatment.

    About the same time I was diagnosed, my older sister was working with a woman who was also diagnosed. This woman had been homeless for a long while and was currently working a minimum-wage job after just getting back on her feet, so though she knew she had a lump she didn't go to the doctor for a long time. She said she knew she couldn't afford any tests or treatment. By the time she finally went in it was very bad stage IV and she died a few months later. :(

  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    SummerAngel, you are spot on: in the US studies I read, that was THE number one reason.

    I am sorry, I've said I'd link to them - my mom is gravely ill and I'm running on fumes - but I will when I can.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    A long and thoughtful article on this frightful shemozle here:

    https://theunderbelly.org/2017/10/a-most-frightful...


  • nihahi
    nihahi Member Posts: 3,841
    edited October 2017

    Thanks traveltext...a very good read.

  • Sara536
    Sara536 Member Posts: 7,032
    edited October 2017

    Great word, shemozle, I'll add it to my vocabulary!

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    Sorry, Sara, the spelling should be shemozzle.

    shemozzle (plural shemozzles)

    1. A state of chaos or confusion; a muddle.
    2. A quarrel or rumpus.


  • kathindc
    kathindc Member Posts: 2,042
    edited October 2017

    Thanks Traveltext. Hope the Mods and the Event Team see your post and read the article.

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