Feelings and insights about Breast Cancer Awareness Month as people with MBC
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
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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.
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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 Mods2 -
Bump. Would love some perspective from others?
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I’d like to see more money for research and less money for pink balloons and yogurt lids.
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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/
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Thank you both for sharing! Would love to continue to hear from others.
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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.
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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.
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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
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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
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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.
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We appreciate all of you, and your heartfelt comments. This is the place to share 🤗!!
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Bumping this topic to get some more comments!
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Who the hell came up with the Friday the 13th date??? "Your bad luck of having MBC is about to get worse, (evil laughter)"
I'm sure it's some 2nd Friday of the month thing or something, but just , WOW. You'd think things can be rearranged in support.
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Concerning pinkwashing: our large shopping centers in Switzerland have decided to sell round, pink treats with a dot of brown chocolate in the middle representing 2 breasts per package to raise awareness of BC. Just imagining that we are going to bite into it... yuck ....
My experience: I had my mammograms regularly from the age of 50 and was discovered to have a small breast tumor in 2016, non-infiltrating, treated by lumpectomy, x-ray therapy and hormone therapy for 5 years. Then, "goodbye, Madam, you are cured", no more follow-up necessary. 5 years later I was discovered by the chance of an X-ray, an impressive number of metastases. All this to say yes, it is good to make the population aware of prevention but I find that there is not enough emphasis on long-term follow-up of people who are supposedly cured.
I only found out recently that there was a day dedicated to mbc! a little day lost in the month of October...and I think I only know because now I'm also concerned. So yes, a bit more money for research and a bit less candy pink would be welcome.1 -
I know the word cure is what everyone wants to hear and wants to believe. But the ugly reality, which is rarely spoken of, is that there is no cure for bc, just the absence of recurrence. I know we want to be positive about those who are treated but I think everyone who is treated for bc needs to be informed of the possibility of recurrence, even decades after initial treatment. Will recurrence happen for most? No, we know that but let’s not gloss over the possibility of recurrence. A new member posted recently about her shock and surprise over recurring two plus decades after initial treatment. She said she was never told that this was possible.
It feels as if people only want to broadcast bc success, which is understandable, but simply gloss over or ignore the possibility of recurrence. I don’t want lower stage patients living every moment in fear of recurrence but they should be aware of that possibility.1 -
This month will be when I receive the automated email, robot phone call, and letter in the mail from my medical center, "We noticed you haven't had a mammogram recently, and we urge you to get one because early detection saves lives". Now, obviously my chart clearly indicates my MBC diagnosis, and these certainly don't come from my oncologist, they are automatically generated as part of a well-meaning effort to get women in for a mammogram. But they are all awful to receive, as I feel defensive every year - I HAD a mammogram the year prior to being diagnosed! It was "clear". 12 months later, cancer in my breast and spine. Although of course we know that lobular cancer combined with dense breasts means it was almost certainly there but the mammogram missed it.
Perhaps this will be the year I write to the CEO and president of the medical center, suggesting they have their IT team write a simple code that would eliminate these "reminders" for anyone with an MBC diagnosis. Or give people the option to opt out. I seriously doubt they would even respond.
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sf-cakes,
I got those mammo reminders too for a few years after my bmx. Eventually, Kaiser did put something in place that stopped those reminders. So please do contact the CEO of your medical center and refer him to Kaiser for the fix!
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I am in Australia and I am afraid the Pink festival leaves me cold. I am aware of the funding for research it raises, but I have the distinct feeling that for the purposes of the campaign it is very much a case of "MBC need not apply". I have also noticed the not so subtle news stories of women "battling" cancer and saw one article obviously written hy a very inexperienced supporter who told the story of an individual who has stage iv cancer and is "cured". On the plus side, the comments under the story were very succinct in correcting that misapprehension. The story may even have been pulled from the online platform by now. So, even if this is bitter and twisted - pink is most definitely not my favourite colour. I far prefer other pastel hues - or the beautiful autumnal palate of colours provided by nature.
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I feel like pink no longer has the value that it once did. There is just to much pink washing. One of my favorite site to share is www.pinkisnottheproblem.org. I have grown to dislike the phrase "pink sister", warrior, and survivor. Being Stage IV they just don't fit me. Not that I have quit living, I just know that until they find a cure, I will eventually lose the battle. I believe it was Susan G Komen Foundation that started pink to represent breast cancer with the race for the cure. Wow we have deviated so far from this. This is my birthday month and it seems everywhere I turn all I have is a reminder the this is cancer month and I have cancer.
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