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Feelings about breast cancer awareness month

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  • cliff
    cliff Member Posts: 86
    edited February 2017
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    there are a lot of men who dont know that they can get it too. and a lot that dont know they have it already. unfortunately, men usually progress farther in the disease becase of never getting checked. most doctors do not check men during routine exams, but check women because everyone is aware of womens breast cancer. I would really, really like to have know sooner about my cancer growing to stage 4.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2017
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    I'm with ChiSandy on the issue of reclaiming pink - I hate that it's been co-opted by cancer (and had for many years prior to dx). In my book, October needs to reclaim it's association with Fall and Hallowe'en and should be all about orange and gold and black. Maybe we could give pink to January, since it's such a dreary month and could use some color? ;)


  • traveltext
    traveltext Member Posts: 1,053
    edited February 2017
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    Most studies are showing male bc awareness in the community running at 30% as opposed to female bc at 100%. We have a lot of work to improve things for men who have, or are likely to have, this disease. Unfortunately pink charities are not doing enough to help men. I mean, if the figures were the other way around, there would be an outcry. Cliff is the perfect example of a guy falling through the bc cracks. My diagnosis was delayed for three months and I was not far off stage IV at the time. It's not the color pink I hate at all, it's the nonchalant attitude to this matter shown by bc charities and perpetrated in their publicity drives.


  • star2017
    star2017 Member Posts: 370
    edited August 2018
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    I hate it too. I was diagnosed last September and had my mastectomy in October. Needless to say I was overwhelmed.


    I hate the ribbon crap. I’ve been given so much of it. I know it’s well intentioned but it’s such a waste

  • josieo
    josieo Member Posts: 140
    edited August 2018
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    star, good to see your comments here.

    I was initially flagged by mammography in December 2017, and as a result of some bumbling and missteps was not biopsied and able to move forward with surgery until March, when I found an outstanding surgeon who took me under his care, gave me a great oncology team, and I could finally feel that I would indeed recover from this nightmare called breast cancer.

    Along the way, my friends did not hit me with what I call “pinkness” - no ribbons, no breast jokes. They knew I don’t like that. I think instead of the number of women who don’t find good doctors, who struggle to keep everything going, and who lack the small things - a call, words of support, a hug of caring, a listening ear when needed. I was fortunate-I had friends who gave me what I needed.

    My focus in October will be to find ways to quietly help others- no pink or ribbons for me.

    I am grateful for the good scientists and caring physicians that help us. They have my dollars and my support

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2018
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    Here's Cliff's post from last year (above):

    "There are a lot of men who dont know that they can get it too. and a lot that dont know they have it already. unfortunately, men usually progress farther in the disease becase of never getting checked. Most doctors do not check men during routine exams, but check women because everyone is aware of womens breast cancer. I would really, really like to have know sooner about my cancer growing to stage 4".

    Cliff died from this disease later last year. Because the pink charities by and large leave men out of the equation, guys like Cliff are diagnosed later and therefore their prognosis is poorer.

    So, this Pinktober I'm back trying to get a better deal for men. This is the site I created for BCO people here:

    www.pinktobersucks.com


  • meow13
    meow13 Member Posts: 1,363
    edited August 2018
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    Just checked it out. I hate pinktober, I think they are starting to down play it. I particularly hate the image of bald is beautiful heads. As if you lose your hair then you are better.

  • edwards750
    edwards750 Member Posts: 1,568
    edited August 2018
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    Me too Meow. I went to a Survivors luncheon a few years ago and everything was purple including balloons. Nice change from the pink. I wish they spent as much money helping women fund their treatments rather than all this pink advertising.

    Diane

  • oxygen18
    oxygen18 Member Posts: 10
    edited August 2018
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    There was a time when some stigma existed, around cancer in general, and BC in particular. I don't see much of that today. If BC awareness month has contributed to destigmatizing by making BC info widely available and BC survivors more visible, and perhaps helping establish good screening habits, then it is a good thing.

    I do wish the color pink would not be used. Anything but pink. Maybe go thru the colors of the rainbow, one by one in seven yr cycles.

    Also, just as it is in the best interest of BC survivors to encourage quality research, it is also in our interest to ensure that charity dollars are spent effectively. We need money for good quality research, and to fund more people as navigators and coaches thru the dx and tx process.

  • ernroo
    ernroo Member Posts: 2
    edited September 2018
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    I am sitting in my office with the door closed and in tears. We just got a cheery announcement from HR announcing Breast Cancer Awareness Month and every Wednesday In October we'll all wear pink! I suppose we will all eat pink cupcakes and have balloons in every office. How can they do this to us? It's awful and feels so cruel. And no they aren't raising a cent to support research or local women who need help with expenses. Just doing the pink thing.

    I went to the head of HR and told them that I needed their support in getting my boss to let me work from home every Wednesday in October so they can party on without me. I think people mean well but just don't realize how awful October feels for some of us. I wish I could get really mad, but I'm just in tears.

  • chisandy
    chisandy Member Posts: 11,385
    edited September 2018
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    Nothing wrong with wearing pink in solidarity...provided it's followed by action: donations, fundraising, volunteering to help patients get to treatments, mentoring, advising, etc. If one buys a breast cancer support item during Oct., make sure that its proceeds get donated to a legitimate breast cancer charity, not just getting on the "pinkwagon."

  • traveltext
    traveltext Member Posts: 1,053
    edited September 2018
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    I wear blue in solidarity with the guys affected by this disease. My small town understands this when they all turn out in pink, and have got the message. I'd like the pink charities to do more to raise public awareness that this is a men's disease as well. Then we won't have more stories like Cliff's one above.

    Certainly agree that the we all need to do homework about the charities we donate to.


  • meow13
    meow13 Member Posts: 1,363
    edited September 2018
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    I hate BC awareness month.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited September 2018
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    Oh, ErnRoo, that's awful and clueless. You'd think HR would ask those who have/had BC what THEY'd like to see done, if anything.

    I've never seen the point of the pinking, but I hate the whole assigning ribbons to various things anyway. I've had other cancers that get NO "awareness" because I guess those body parts aren't as glam as boobs. And I certainly don't need a damn souvenir of any of them. When I told family and close friends on FB that I had BC, I included the information that I'd throat punch anyone who tried to inflict pink on me. Go donate money for research or treatments, or volunteer, but don't buy or wear crap once a year and think you've done something wonderful.

  • meow13
    meow13 Member Posts: 1,363
    edited September 2018
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    A friend of mine gave me a get well balloon and a bright pink bucket. I call it the pink puke bucket.

  • WC3
    WC3 Member Posts: 658
    edited September 2018
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    Oh I don't mind it. I think it's great that breast cancer isn't such a taboo subject to talk about. But I think awareness month falls short in disseminating a lot of information about breast cancer people should know, for example, as Traveltext stated, that men can also get it. I would have liked to have known before I got breast cancer that there is a high risk clinic in my city, that there were alternatives to mammograms that I should have been offered given my breast density and family history. I had asked for a mammogram when I was in my early 30s just to get a baseline and my doctor at the time told me they don't do them in women my age because the breasts are usually too dense to see anything. But he should have told me about MRIs.


  • hodgepodge
    hodgepodge Member Posts: 15
    edited August 2019
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    14 years ago I was watching TV during the glorious month of Pinktober. I saw one of those commercials reminding everyone to check themselves. That night in the shower I checked myself for the first time in I don't know how long. I felt a little hard bump. As soon as I felt it I had that jolt of panic. I immediately had my gyno schedule a mammogram. Nothing showed up on the mammogram but by gyno scheduled me with a breast surgeon to calm me down. The breast surgeon suggested a wait and see approach and I insisted on a biopsy because I was feelling so rattled that I found the lump right after seeing that commercial. She agreed even though she was sure it was nothing. She did the biopsy and sure enough it was DCIS. I had lumpectomy (and re-excision to get good margins) and 7 weeks of radiation and was left with VERY different sized boobs but felt "cured". I felt like I should be grateful for Pinktober because it encouraged me to check myself which I had not been doing. BUT I hated having that reminder. I wanted to push it out of my mind forever. Every pink thing I saw made me sick. Now, 13 years after having completed my treatment I was diagnosed with a recurrence that was IDC this time. Again, found by me and thankfully early. I can't decide what I think about pink. Do I appreciate it because it put me on the path to awareness and advocating for my own health? Or hate it for co-opting of cancer, sexualizing of the disease, corporate profiteering, and the whole pinkwashing phenomenon? Being diagnosed comes with a rollercoaster of emotions and the whole Pinktober thing does too.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2019
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    the pInk charities are starting to get their acts together regarding the color pInk. Five, years ago, when I was diagnosed, you'd rarely hear that breast cancer is a genderless disease.

    There's nothing much for me in Pinktober. In fact, some BCO people helped me put this site together:

    http://pinktobersucks.com/



  • mountainmia
    mountainmia Member Posts: 857
    edited August 2019
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    We all have a special ability to create breast cancer awareness year round. We all have knowledge and stories we can share that are unique and powerful. We can take advantage of opportunities as they arise, in small groups or one on one, or even in large group meetings occasionally. We have social media to share our stories, and to dispel myths, and to remind friends and relatives to check their breasts and get their exams.

    And when it comes to October, we can also remind them that it's more efficient to make a donation directly to an organization like BCO, or ACS, or Hope Lodge, or the non-profit cancer clinic, than it is to buy a "pink" product that will have "a portion of profits" donated to an organization.

    And we can remind our friends and relatives to vote for candidates who support research (SCIENCE!!) and health care access.

    We have a lot of power if we choose to use it.

  • divinemrsm
    divinemrsm Member Posts: 6,154
    edited September 2019
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    Traveltext, I didn't know about your pinktober sucks website! I had a quick glance at it, bookmarked it, and will check it out further when I get time. It looks like a great site.


  • edj3
    edj3 Member Posts: 1,579
    edited September 2019
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    Traveltext love the site. I've really struggled with the sexualization of breast cancer, and the emphasis on female breast cancer. Not to mention the way it overshadows other cancers.

    I was dx'd w/ melanoma in August 2017 and got exactly zero support on dealing with that diagnosis. The difference between that dx and the BC dx has absolutely infuriated me. Yes, I'm glad for the support now, since I'm female w/ BC. But what about all the other cancers? What about men w/ BC??

  • traveltext
    traveltext Member Posts: 1,053
    edited September 2019
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    Divine, thanks, it was done a few years ago and little has changed.

    Edj3, Like you, Ive had a second cancer (prostate) and have been in a position to judge the differences in fundraising campaigns for other cancers. Melanoma has a very nasty prognosis and research is underfunded. Prostate cancer is a leading male cancer and, again, research funding comes nowhere near that for bc.

    What amazes me most about the pink charities is the shameless hoopla, almost carnival atmosphere, they create around their fundraising efforts. Surely the seriousness (and the genderless nature) of breast cancer could be better presented to the community. But, no, we have charities bloated with marketing and publicity people, with the percentage of raised funds spent on admin often around 70 per cent, and leftover funds tipped into, often, duplicate research projects which never amount to anything useful. All this under the banner of a big pink party in October.


  • alicebastable
    alicebastable Member Posts: 1,945
    edited September 2019
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    I've had endometrial, skin (basal cell, but one required a large Mohs surgery), breast, and kidney. I still get pissed about all the attention breast cancer gets. It's the glamour cancer, with all the pink fluffiness. Nobody gives a crap about the others.

  • edj3
    edj3 Member Posts: 1,579
    edited September 2019
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    If someone tries to tell me they're going to save my tahtahs this year, it might get ugly.

  • traveltext
    traveltext Member Posts: 1,053
    edited September 2019
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    When you think about it, a month celebrating breast amputation is pretty gross. And turning this very traumaticsurgery into some sort of sexualized scenario is very weird.


  • meow13
    meow13 Member Posts: 1,363
    edited September 2019
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    I agree traveltext it is revolting to me.

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2019
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    Agree that the sexualized, fluffy, party-like "awareness" campaign that takes over Octobers is revolting. However, I don't agree that there is undue emphasis put on breast cancer. I'm having a hard time finding my source, but I believe that for women, breast cancer is approx 30% of cancer incidents, and is by far the most common type of cancer for women. While no cancer should be ignored or downplayed, the prevalence of breast cancer as compared to others makes justification for the financial focus in support for research.

    Consider this: I was diagnosed with triple negative breast cancer. Okay, so given that it's about 10-20% of breast cancers, and breast cancer is about 30% of women's cancers, TNBC is about 3-4% of women's cancers. Am I frustrated that there is a lot more research on ER+ cancers? You bet. Does it make sense? Of course. ER+ cancers are something like 65% of breast cancers. Of course most of the money should go there UNTIL science solves that riddle.

    It's more upsetting to me that people (who fortunately don't have reason to know better) seem to think that all breast cancers are alike, and there is a 99% survival rate from them. People who continually say "I know ..." so-and-so who had "it" and they're just fine!! Hooray!! I am happy they are just fine. But we are not all alike. We don't have the same cancer, the same treatment, the same initial health status, or the same prognosis. It's not that simple for those of us on the inside of the story.

    We who do know better could help counteract the PINK campaign by being straight and clear with those we're connected to. We can tell them about breast cancer, some truths about it generally and about our personal experience. But if we stay silent, all that people get is the marketing.

  • edj3
    edj3 Member Posts: 1,579
    edited September 2019
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    MountainMia I hear you on educating others.

    But I'm finding even in these early days of BC and me that people do not want to hear anything other than "Yay! You did it, you're recovered, cured, everything is perfect!"

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited September 2019
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    Traveltext, but you miss the point. They are not celebrating breast amputation. Quite the opposite. They are trying to SAVE THE TATAs! (edj3, my apologies) And that is cause for celebration, right?

    Just one little thing niggling at my mind that bothers me a bit. What about saving women's (and men's) lives? Aren't our lives more important than our breasts?

    Seriously, every year you think it can't get worse, but every year it seems to. Breast Cancer Awareness Month? Everyone knows about breast cancer. That said, there is a lot about breast cancer that most people don't know. Yet the events seem to do their best to hide the true reality of breast cancer. That's what infuriates me. Everyone knows that breast cancer exists and yet most people are so ignorant about breast cancer, despite (or because of?) the pinkwashing.

    How about making people aware of the fact that approx. 30% of people diagnosed with breast cancer do not survive it? Or that early detection and early stage, while a good thing, is no guarantee of survival. Or that metastatic breast cancer can be present on day 1 or might not present for 5 years or 15 years or even 25 years - too many people still believe that we are all home free after 5 years. Or that a mastectomy or even an a BMX does not mean that the cancer might not return, locally or as a metastatic recurrence. Or that an "all clear" on a screening mammogram, while a good sign, does not mean that you don't have breast cancer because, frankly, breast cancer screening isn't all that accurate. Or... I won't go on but I'll bet every one of us can add to the list.

    Maybe it wouldn't be so bad if someone actually did breast cancer awareness right and educated people about breast cancer. But it's not all pretty and pink, so that's not going to happen

    Edited to add: MountainMia, I agree with you but unfortunately no one wants hear the real facts. Breast cancer patients who want to speak out about the reality of breast cancer are going to spoil the party so we don't get invited. Yes, there is an occasional article in a newspaper or on the local nightly news, but it doesn't get further than that. Any platform we create gets little press and support. It's not like this hasn't been an issue for years - certainly since I arrived on the scene 14 years ago - and it's not like those affected by breast cancer haven't tried to influence the message. But we're no fun and no one wants to hear us.


  • meow13
    meow13 Member Posts: 1,363
    edited September 2019
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    I am in favor of more studies and statistical models that show data on various treatments. With so many BC people out there we should be collecting large scale data. In my opinion, the oncodx tests and others should be periodically verified. I am happy to see validation studies such as tailorx. To me that should be the emphasis, stop blaming the victim. Regular checking for lumps/symptoms and mammogram screenings are important but no one ever talks about extremely dense breast tissue and screening limitations. I never had symptoms or a lump I got really lucky a radiologist saw something and decided to do ultrasound and an MRI. Now I am told mammograms are not good enough for me I have to have a yearly MRI. Still after all these years I have very dense tissue in remaining breast.

    I find the whole pink celebrations nauseating. It is not a sexual thing, ask traveltext.