Take the Fright Out of Breast Cancer™

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

    We're all discussing the fear factor here, but this very good article HERE emphasises why worry is such a big part of our cancer experience.

    Like fear, worry is ever present, and like fear no amount of awareness ever prepares you for this aspect of the disease.


  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    great blog post...to me, worry is fear's child. It's the day to day, minute to minute tactica manifestion of fear. Fear is the mother ship, and the thousands of worries its little aliens sent out onto planet human. And through every single worry, there - for me - is the awareness that fear is holding its hand.

    If others could understand this reality for us, I believe that talk about breast cancer would really evolve. And here is the silver lining in this current campaign. Bringing up the concep of fright was a good thing. Suggesting it could be removed was not. So a rework on this could be powerful

  • Fiddleman
    Fiddleman Member Posts: 59
    edited September 2017

    Hi PoseyGirl. I do not want to trivialize fear's power and the resulting worries (great observation, BTW) it spawns, but this was sent to me by a good friend while I was in treatment. It helped me, and others may find it helpful as well. "Hope is the only thing stronger than fear." For someone with terminal stage IV cancer, of ANY variety, this may appear superficial and trite. If so, I sincerely apologize. But to live without hope is to surrender to fear, fear leads to paralysis and paralysis leads to despair. No matter what trials, health or otherwise, may face me, I hope I have the strength to avoid traveling that path to a truly living-hell in which many patients suffer daily.


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

    I'm not stage iv, and I have always found that "hope" thing offensive. I know you don't think so, but it implies the same lie as the "health" thing. If you are "healthy enough" or if you "hope" enough....if you "fight" hard enough, if you "pray or believe in god" enough...etc,.etc.......

    That all puts a burden on you to "do something" right enough or cancer will win. I don't think that is fair to anyone, and would increase the fear factor..."am I doing enough"????

  • Fiddleman
    Fiddleman Member Posts: 59
    edited September 2017

    nihahi, I knew when I made this post that some might find it objectionable, but there are as many paths through cancer as there are its victims. I'm suspicious that, for some, hope, provides comfort. My comments were not intended to place a guilt trip on anyone. Having this disease is stressful enough, even minus the element of guilt. Stress is detrimental to our health. It raises blood pressure and suppresses the immune system.

    In all aspects of health, reducing stress increases the possibility of avoiding some of life's inevitable anguish. Anything that reduces stress MAY help. Some do so by relying on a god, some on their medical professionals, some on their family connections, some on the gym and some chose otherwise. Whatever path one follows should not be judged by anyone. Nor should one choose to accept the mantle of guilt associated with any societal "judgement". As the Pope said, "Who am I to judge?"

    I'm a male with breast cancer. I started this process by wracking my brain as to what could have caused this. There's virtually no cancer in my immediate family, and absolutely no breast cancer! I'm a former smoker. As a kid I was fried many times at the beach before there was sunscreen. As a biology teacher, formaldehyde exposure was inevitable and constant. I decided that putting the guilt on myself served no purpose. It is what it is. Genes mutate. DNA repair breaks down. S_ _ _t happens. I just want to be as positive as my circumstances will allow me to, and they very well may go down hill rapidly. But I have no idea how I'll react at the end, in whatever form it takes (cancer's not the only tool of the Grim Reaper.) All this may look like B.S. then, and I may have to publicly recant. Hope is not the cure for cancer, but its opposite is despair. We all find ourselves somewhere on that continuum. We should neither judge, nor accept judgement for, our own personal circumstances.


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

    Hopeful, had I seen those I might have set them on fire. That's reprehensible.

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    Fiddleman, I think your post is lovely. No matter how cliched the word may look or sound, we shouldn't blame the sentiment and ideology because of over packaging.

    My husband has said to me several times through all this, "how do you fight a ghost? With a ghost sword". Meaning you have to fight fear with its true foe. Hope is one of those. Or prayer. But it's a spiritual or mental weapon that is needed.

    Thank you for this..

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

    Whoa, sorry if I caused a bit of an uproar. But I get so frustrated when I hear people say I'm ok it won't happen to me I exercise, my BMI is good etc etc.... Some people try so hard to do the right things to prevent recurrence but it doesn't matter.

    We don't know what is causing the BC, don't fool yourselves or especially don't blame yourself for getting it. Campaigns spreading the word of knowledge and awareness also need to say anyone can get this regardless of your health or lifestyle.

    The idea that if you are overweight or drink alcohol it is a ticket to getting BC is crazy. We don't know what is causing it.

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

    I wrote an essay on hope and fear a year ago: http://malebc.org/hope-and-fear/

    I'm now not sure that I stand by all my thoughts back then, but I still believe we face conflicting emotions based on basic human attributes.

    Really, though, we all hav to find strength from within us to deal with all the crap that comes our way, and who's to say what's the best way to do this. It's just whatever works for you.


  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited September 2017

    I would drive the getaway car for outfield and meow. Agree that "Cancer hates healthy bodies" campaign is reprehensible.

    I still vote move the date from Halloween and you cannot take the "fright" out of cancer.

    Maybe make it a casino night and costume/masquerade ball.. Have a craps tournament as a fundraiser.

    Call it: "Breast Cancer is a crapshoot. Anyone can get it. There is no cure."

    Others can determine education content/agenda. NED and what that means would be good

    Then have "buckets" people can donate to: research/cure, support someone with MBC (actually make funds available to those who might need help at certain times), early detection (if you must), BCO website for support and education for all stages






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

    Honeybadger...great suggestions!

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

    I agree the campaign should focus on really finding that cure or better medicines to preserve QOL.

    Right now the treatments can be as scary or even more scary than the cancer itself.

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

    That's one hell-of-a-good-idea HoneyBadger! Seriously - A campaign that doesn't deny or sugar-coat the truth yet will attract people who want to have a good time when they donate. It would provide more cancer education than a rock star benefit concert and not commandeer anyone else's special day.


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

    A week ago the Mods announced:
    We've heard your concerns, and are making changes to address many of the points you've raised in this thread. Our intention has been to address fear as one of the many barriers that may keep people from getting the best care possible. We have changed our About page, and our flipper banners. The initial post in this thread is now the new language in the About section of the campaign. More changes will be coming in the next weeks. We will be inviting community members to join us for some live discussions on how we can make our efforts better in the future. We'll try to reach out to some of you individually but if you don't hear from us and are interested in talking to us, please let us know. Thank you as always for you honest feedback.

    Well, the campaign has kicked off: http://support.breastcancer.org/site/MessageViewer...

    Did anyone get invited to "live discussions on how we can make our efforts better in the future"?

  • Wildplaces
    Wildplaces Member Posts: 864
    edited September 2017

    Spreading awareness??

    Alleviating fear of breast cancer?

    Donations?

    Uncertain of the mods thread aim...


    In my experience these are theground issues that keep people from getting the best possible medical care for breast cancer:

    1. Money

    2. Time

    3. Location/access to high quality medical care/ tests and trials

    4. Knowledge medical practitioners, patients and their supporting family/network

    Fear that stops a man or a woman from seeking medical treatment is the result of

    - not having one or more of the above

    and

    - being faced with an illness that is life threatening

    There is much reason to hope in early Stage disease - there is also REASON to fear.

    Breast Cancer kills women and men everyday.

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

    No invite here. Two days in a row this past week, I got an email from the Event Team reminding me of the kickoff for this ill conceived campaign. I did let them know that BCO will not get a donation from me this year Because of the tone of the message. Have not heard back and don't expect to. Notice how the Mods have gone quiet or is it just me.

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

    I thought we all agreed you can't take the Fright out of Breast Cancer?

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

    BCO mods go quiet when they are off doing what they wanted to do in the first place.

    Yes, we all agreed you can't take the Fright out of Breast Cancer, so they tweaked the campaign and promised further consultation.



  • marijen
    marijen Member Posts: 3,731
    edited September 2017
    • SUSAN G. KOMEN® ANNOUNCES $31 MILLION IN 2017 FUNDING FOR 98 BREAST CANCER RESEARCH GRANTS, WITH FOCUS ON AGGRESSIVE AND METASTATIC CANCERS

      Dallas, TX — September 26, 2017Susan G. Komen, the world's leading breast cancer organization, today announced 2017 research funding of $30.7 million for 98 research grants, with a focus on new treatments and understanding of the most lethal forms and stages of breast cancer. Komen funding to institutions in 25 states and 7 countries also includes research into new screening technologies, treatments for metastatic and aggressive types of breast cancer and disparities in breast cancer outcomes.For the first time, beginning in October, Komen is also giving members of the public the opportunity to directly fund specific research by participating in a crowdfunding initiative on Komen's website, komen.org."We are focused on new treatments, ways to overcome drug resistance in breast cancer patients, and a better understanding of how and why breast cancer spreads, so we can better treat metastatic breast cancer or prevent it all together," said Ellen Willmott, interim president and CEO of Susan G. Komen. "This focus on aggressive and metastatic disease is the foundation of our Bold Goal to reduce breast cancer deaths by 50 percent by 2026."Metastatic breast cancer – which is breast cancer that has spread to other parts of the body like the brain, liver, bones or lungs – is responsible for almost all of the nation's 40,000 annual breast cancer deaths. More than 154,000 people are living with metastatic disease in the U.S. today. By targeting metastatic disease (the focus of more than 41 percent of Komen's 2017 research investment), Komen is hoping to reduce breast cancer deaths dramatically in the U.S.This year's funding also includes $17.6 million to early-career investigators. "Funding for early-career researchers ensures a continuum of breast cancer research, across generations, which is critical in a time of tightening federal research dollars," Willmott said.Komen's 2017 portfolio includes*:37 grants expanding our knowledge of metastatic breast cancer and how to better treat it or prevent it;
    • 37 grants looking into novel treatments for aggressive types of breast cancer (specifically, triple negative, inflammatory breast cancer, luminal B, and ER-positive recurrent breast cancer).
    • 59 grants focused on new therapies, including 10 for targeted therapies and 20 for drug development
    • 24 investigating drug resistance (why drugs stop working in some patients)
    • 9 on disparities in breast cancer outcomes and 2 involving Big Data
    *Eds Note: Numbers may add to more than 98 because individual studies may be classed in more than one category.Making a Personal Impact – CrowdfundingThis fall, Komen is making it possible for supporters to make a personal impact on breast cancer research through a new crowdfunding initiative supporting specific Komen mission programs. Beginning in October – National Breast Cancer Awareness Month – Komen will highlight four metastatic breast cancer researchers and encourage donations to their specific grants, with an opportunity to have donations matched."Our community is always eager to make a personal connection and to know their impact on breast cancer research," Willmott said. "We hope that our friends and donors will come forward to help support these research grants in October, or to support our work in other ways."Komen's 2017 research program brings Komen's total research investment in breast cancer to more than $956 million since opening its doors in 1982, the largest of any nonprofit outside the U.S. government. In addition to research, Komen and its nationwide network of Affiliates serve women and men in thousands of communities. To date, more than $2.1 billion has been invested in community programs that provide education, screening and treatment support.
  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    This is indeed good news:

    "Komen's total research investment in breast cancer to more than $956 million since opening its doors in 1982, the largest of any nonprofit outside the U.S. government. In addition to research, Komen and its nationwide network of Affiliates serve women and men in thousands of communities. To date, more than $2.1 billion has been invested in community programs that provide education, screening and treatment support."

    However, this is the reality

    image


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

    Wildplaces, you are pretty close to what research has shown. The Mods never answered at all when I posted a while back asking where they got the idea that fear of the disease or the treatment was a major barrier. I think it's a pretty reasonable question if they're bound and determined to use such an offensive campaign.

    I'm disgusted and I wish I had never responded to any query about what my fears where, because they clearly don't care.

    I've lost a huge amount of respect I had for this site. We are in the process of selling a house and I was going to donate when we finished, but now I think I'll put my money elsewhere.

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Thank you Outfield. 😊


    Traveltext - I just clicked on your posted link.

    To be frank I follow only a few threads and I thought it was all a bad joke.

    There REALLY is a site on the BCO stating

    "Take the fear out of breast cancer"

    To me it feels cruel and stupid

    Breast cancer means that a person will have their breast slashed off or gently dissected only to be radiated to the point where skin loses mobility over fascia and muscle or worse breaks down altogether (or as my radiation oncologist joked on side effects - " it's been a while since we broke ribs" - I thought she was well cooked and smirked as she was the real deal - if you are going to fry me please do me the courtesy to not pretend I will be fine with a bit of cream).

    Breast cancer means that a person is then up for a minimum of four moths of gruelling chemo, to follow only by years ( 5,10 who really knows??? maybe more) of hormone suppression - earlier onset cardiac disease, bone loss and joint degeneration, sleep disturbance, thinning of everything to name but a few...

    And this falls as the easy street - this is when you are "early stage" and maybe hormone positive... and where you consider yourself blessed to be taking your pill, flushing your port for two years, getting your scans, waiting in oncoloy offices.

    For a look at advanced disease there are a couple of current threads that tell poignant stories of courageous clever sassy women whose lives are being decimated by breast cancer. That some of these ladies manage to continue working and caring for families and even going to the Opera - is a testament to their inner strength and capacity to withstand pain, not to their lack of fear.

    Really sad we have come to this in seeking funds for Breast Cancer.

  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited October 2017

    No invite here, Traveltext.

    Wildplaces, for me, you just said it all. If that doesn't get a response, I have no idea what will.



  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2017

    Based on what I am seeing looking at Komen's 2016 financial statements they actually spent more on research last year, $33million. What is not included in the above post is that this represents less than 15% of the total monies raised by Komen. They spent triple this amount on public health education, whatever that means. I would like to see these numbers reversed at this point - the awareness campaign expenditure represents a misguided and outdated allocation, in my opinion.

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2017

    Agreed, SpecialK.

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

    Long Breast Cancer article at New York Times today in the Health Section

    http://www.nytimes.com/health/guides/disease/breas...

    Please check to see if it's accurate and comprehensive enough.

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

    2:04 AM EDT October 2, 2017

    The White House glowed pink overnight to mark the start National Breast Cancer Awareness Month in the United States.

    "During October, we raise awareness and encourage people to take steps to reduce their risk of breast cancer," First Lady Melania Trump said in a statement released by the administration Sunday.

    "I encourage all women to talk to their health care providers about mammograms and other methods of early detection and what can be done to reduce that risk," it quoted her as saying.

    The White House said that more than 250,000 US women and 2,000 men would likely be diagnosed with breast cancer this year.

    "To encourage women to take steps in detecting breast cancer early and to express solidarity with those who have been affected by the disease, the White House will be lit pink this evening," the statement said.

    First Lady Melania Trump later tweeted a photo of the illuminated White House portico taken from within the residence, saying: "In honor of National Breast Cancer Awareness Month we lit the @WhiteHouse pink!"

    "Oct is Natl Breast Cancer Awareness Month. Please talk to your doctor about early detection & reducing your risk. #BreastCancerAwareness," Trump said in an earlier post.

    The American Cancer Society says breast cancer is the second most common cancer in women in the United States.

    On average, American women have a 1 in 8 chance of developing the disease, the society says, estimating that more than 40,000 women will die from breast cancer in 2017 alone.

    The White House was first turned pink for Breast Cancer Awareness Month on October 7, 2008. First Lady Laura Bush turned on the lights.

    © 2017 Cable News Network, Inc. A Time Warner Company. All Rights Reserved.

  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2017

    Currently in the exam room waiting to see MO. This doesn't get any less frightening. Just sayin'

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    I find (Thank you specialK!!! For reminding us what Our donations contribute to) the apportioning of funds to awareness campaigns in this day and age astounding!

    In under 50 women with dense breasts MRI is probably the screeninginvestigation of choice - not currently supported by health schemes because of cost.

    I wonder whether there might a place for an option where you can specify what you would like your donation to go towards - research towards prevention, early disease, late disease, services for Stage 4, services for single mothers with Breast cancer, male Breast cancer etc???

    Mods any ideas ??? Dream a little dream! 😊🌷

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Apologies, we should have posted this earlier.

    The concept of fear as one of the many barriers that may keep people from getting the best care possible is based on some of these sources:

    Study on Japanese women who delayed and didn't delay breast cancer treatment: https://www.ncbi.nlm.nih.gov/pubmed/28544470

    Study on the fear of recurrence that has stats in it: https://www.ncbi.nlm.nih.gov/pubmed/23448956

    Study on Turkish women to see how long it took them to see a doctor after noticing a breast cancer symptom: https://www.ncbi.nlm.nih.gov/pubmed/28481775

    UK study looking at factors that affected the time between when a woman noticed a breast cancer symptom and when she sought healthcare: https://www.ncbi.nlm.nih.gov/pubmed/27680898

    A study on why Iranian women don't seek care after breast cancer symptoms:https://www.ncbi.nlm.nih.gov/pubmed/25422236

    UK study on why women delay reporting breast cancer symptoms to their GPS:https://www.ncbi.nlm.nih.gov/pubmed/11766868

    Irish study on why women may delay seeking medical care after finding a breast cancer symptom:https://www.ncbi.nlm.nih.gov/pubmed/21094088

    Study on why Chinese women may delay seeking health care after noticing a breast cancer symptom:https://www.ncbi.nlm.nih.gov/pubmed/23208839

    Why black women in the San Francisco Bay area may delay seeking health care after noticing a breast cancer symptom: https://www.ncbi.nlm.nih.gov/pubmed/9250078

    There are many more studies, each looking at a specific population of women. This link:https://www.ncbi.nlm.nih.gov/pubmed?linkname=pubmed_pubmed&from_uid=27680898 should give all the results to you.

    Wildplaces, thanks for the suggestions. Bringing it back to the team!

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