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Feelings and insights about Breast Cancer Awareness Month as people with MBC

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October is Breast Cancer Awareness month, which can be an overwhelming time for many women and men affected by breast cancer, especially for those with a metastatic breast cancer diagnosis.

We'd really like to have everyone discuss here what you think and feel approaching this month.

Thank you ❤️

Comments

  • keris113
    keris113 Member Posts: 45
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    This is my first Breast Cancer Awareness month being diagnosed with de novo MBC. Obviously I have a newer insight into it and all the 'pinkwashing' that goes on. I already feel overwhelmed and triggered by it and it isn't even here yet. I think there is a lot of promotion going on about 'awareness' and I feel very aware of breast cancer, particularly MBC. I wish that there was more done by these organizations that made MBC more of a forefront for the month and instead of promoting awareness, they promoted funding for research and treatments that could help both MBC and potentially earlier stages as well. It is disheartening to hear how much of the funding goes towards MBC research and it makes me feel a little hopeless to be honest. I want so much for more research to be done to advance treatment and help with better outcomes, and funding can only help to expedite that. Don't get me wrong, earlier stages deserve funding and awareness as well but it would be nice if MBC got just as much focus.

    And its a little bit of a slap in the face that MBC gets one day out of the whole month and it is the 13th, Friday the 13th this year.😐️

    Sorry if this came across as bitter or bad in any way, just feeling a lot of emotions towards this and everything.

  • moderators
    moderators Posts: 8,283
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    Hi @keris113,

    I think you hit a lot of great points that many can relate to. It didn't come across as bitter, but rather as someone who is validly frustrated with the focus and the way funds are allocated. It is understandable to want there to be more treatment options to prolong one's chances until a cure is found, but also to improve life quality. Because as we know, it's not just about increasing time, it's about being able to enjoy the time one has. And to your point, for all the awareness campaigns there are… many folks who have not been personally touched by breast cancer that do not understand the experience of breast cancer patients and their families and unintentionally share insensitive statements or advice while attempting to be supportive. Awareness should be more than just letting people know that breast cancer exists and what preventative measures to take to identify earlier, so on and so forth. It should be to help individuals in our society become better supports for those who are in it and have a better understanding of the reality and experiences of those going through early and metastatic breast cancer.

    Thank you so much for sharing your genuine feelings about this. I know others will relate to what you have expressed, and welcome to our BreastCancer.org Community. ❤️

    Warmly,
    The Mods

  • moderators
    moderators Posts: 8,283
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    Bump. Would love some perspective from others?

  • olma61
    olma61 Member Posts: 1,027
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    I’d like to see more money for research and less money for pink balloons and yogurt lids.

  • sondraf
    sondraf Member Posts: 1,629
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    Yeah the 13th date really doesn't help, I feel like a troll under the bridge when it comes around. I know metavivor are trying to raise more awareness, but no one wants to acknowledge that no, BC still isn't fully 'cured', no its really not an easy thing to go through for a lot of people, and yes, people still die from this and in a lot of cases its not pretty.

    Is it just me or has Movember kinda fallen off quite a bit? Maybe its just not as much of a thing in the UK (bowel cancer seems to have overtaken the general cancer discussion), but I feel like I hardly see anything more about that when there was a large push a decade ago or so. Sometimes BC seems to be the only serious disease that has an entire month of 'celebration' and focusing on the 'before' (early awareness) or the early (caught small, easily treatable). Who is this month really supporting - large non profits with enormous cachet and management payrolls or the actual patients and research teams? In a way its all starting to feel a bit passe and time for messaging to move on, but that could be my personal existential crisis coming through :P

    The UK breast cancer charity seems to focus more on the SBC ladies and the ugly side of the disease and how it affects all populations. A few years ago we railed over the 'Unsurvivors' campaign to raise MBC awareness but it got people talking at least. This year they have a short film of women discussing what more time would mean for them, along with supporting people and healthcare providers to support SBC signs earlier:

    https://breastcancernow.org/

  • moderators
    moderators Posts: 8,283
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    Thank you both for sharing! Would love to continue to hear from others.

  • vlnrph
    vlnrph Member Posts: 493
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    I have disliked the commercial aspects of Puketober for over a decade but was involved in a couple educational non-profit events (NOT “Save the Tatas”, wearing pink wigs or ridiculous decorated bras, walks/runs, etc.) during the first few years. However, since becoming metastatic and then with the pandemic, I do very little crowd participation of any kind.

    After learning that MBC emphasis is set for Friday, the 13th and with Halloween at the end of the month, I’m thinking about how to tie those together. For instance, the scariest thing regarding breast cancer is not lacking awareness. It’s the risk of spread to organs such as lung, liver, or brain. People die from that kind of disease. Be realistic, get the facts!

    Maybe I’ll write those statements out and tape a piece of candy to them for our local support group. They meet in person unmasked so I will not attend anymore except to stick my head in the room after exercise and give an update on my status. There used to be a page here where we could share ideas like these. Metavivor has a good slogan: Don’t Ignore Stage IV.

  • brutersmom
    brutersmom Member Posts: 924
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    As October 1 Breast Cancer Awareness month approaches, I am starting to see posts of products being sold by private businesses that really don't support breast cancer programs. They call us survivors or warriors. Sadly I don't feel like a warrior or a survivor. I am a fighter and will contine to be. Some days I have trouble pushing through the fatigue and brain fog caused by the meds. True I fight, but short of a miracle I will never win this battle. As for a warrior i have not been trained to win this battle. I have to learn and fight as best I can. As for survivor. I am not one of them my cancer came back stage 4, 7.5 years after initial diagnosis.Yes I am NEAD right now but at some point the meds will stop working and it will be on to something new. So unless I die from something else first, I will not be a survivor. I am surviving ever day and doing the best that I can. Some people would say well that is what a survivor is. To me a survivor is some one who beats the disease. As long as the meds work I am good. I am not depressed life has been good the last few weeks. I just find how little truth is share during the month of October. Sure catching it early helps but it is not a guarantee. And the meds to prevent recurrence can be hard on people in many different ways. Many people have such a limited understanding of what it is like to be in this fight. 

  • bright55
    bright55 Member Posts: 146
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    In Australia the mcgrath foundation had a big impact on early breast cancer support...men in pink at major cricket matches raised awareness and money raised allowed for mcgrath breast cancer nurses to be available to bc patients since the in last few years metastatic bc nurses have been stationed at major public hospitals

    I am lucky to have such a nurse

    We chat about about new research family and life when I await my onco app

    She is always up to date on my treatment and i can contact her if problems arise

  • bright55
    bright55 Member Posts: 146
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    Personally for five years I wanted no reminders of bc diagnosis

    I do not enjoy the pink celebration of bc events and for last 8 yrs have been metastatic ..this year started first chemo so more friends n family aware of side effects if treatment

    All the best everyone

    Bright in hope

  • mkestrel
    mkestrel Member Posts: 167
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    Around here the race for the cure etc. left and so it's other local people who had breast cancer treatment and hospitals who organize events. They raise some money for local people and have the early detection mammogram events. Most aren't in October and some are but anyway there are people trying to do nice things. There is a lot being said about the cost of treatment causing delayed treatment. There's not much said about metastatic cancer though. It's mostly about early detection saves lives.

    I guess it's the feeling I get of being in the "small" percentage of failure, the loser of the pink race, for whom the finish bell tolls lol the warning story. Mets day Friday the 13th. Ooh she didn't get screened early enough, so look what happened. Wasn't positive enough, ate too much sugar. Insurance companies howl about the pointless expense to treat me. Treatment is palliative not curative. Such high maintenance females.

    I try to keep some humor about it. Once I asked my doc and a tech when do I get the Pinkenblink scan? After their confused stumped look I said something like you have me drink a shot of Fireball with tracer and all the cancer cells turn pink, blink and implode.

  • moderators
    moderators Posts: 8,283
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    We appreciate all of you, and your heartfelt comments. This is the place to share 🤗!!