Beyond Pink: The Other Side of Breast Cancer Awareness
And so it begins. Pinktober is upon us.
I’ve been working on my monthly article for the Patient Empowerment Network and this month’s theme is in keeping with Breast Cancer Awareness Month.
I’d like to share lessons from the community that go beyond the pinkfication of breast cancer. What do you want others to know about breast cancer awareness this month? Which key messages should stand out in discussions around breast cancer?
Please add your thoughts to the comments below.
Marie I’m going to put some thought into this and get back to you meantime I reblogged
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You are THE best Ilene – thank you so much
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Marie I wrote my post for you to take away what you need – and I included a poem especially for you – not about you (god knows your empathy and love go beyond my words) but it’s those deep, painful cuts that kill before we’re cold and dead. This month is not one of joy for terminal stage four endurers (thanks to the Rudeman Rudy Fischman who has inoperable terminal brain cancer for this apropos term). It’s one of anger, jealousy, loss, and one stinking day on which we will still lose an average of 114 people. Love you.❤️
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Thank you so much Ilene for always, always speaking truth to power.
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Hi Marie,
Here’s a summary of how I look at some of the key messages that should stand out:
Although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high. The World Health Organization estimates there were 627,000 deaths from breast cancer worldwide in 2018. And there is striking inequality in death rates across populations. For example, in the US, breast cancer mortality is a striking 39% higher for African American women than for European American women. We’re still in urgent need of more effective and less toxic treatments that are also affordable. We need to resolve issues that are limiting people’s ability to receive quality care, including geographic issues. And we also need to seriously tackle the problem of reducing our exposures to toxic substances so we can prevent most cases of breast cancer from starting in the first place.
Hope this helps!
Lisa
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Hi Lisa
I wholly support the idea we need to talk more about living with mets. Also, I find people ask me if my cancer is in remission: I say we don’t really say that re breast cancer but I think that reflects a misunderstanding in the wider community.
As a.large breasted woman, I have found the advice I am given ignores the physical impact of having one breast. With hindsight, the option of double mastectomy could have been explained differently/better. That’s something I’d like to see discussed more.
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Sam thank you so much for taking the time to leave a comment here. I really appreciate hearing your point of view.
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This is wonderful – many thanks Lisa
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Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. We all know that self checking is important but you’d have to be living on Mars not to know about this campaign. The pink ribbon is synonymous with breast cancer and awareness month has promoted this message for years. There has been little focus on secondary breast cancer and the only day for awareness is 13th October. Awareness of SBC needs to be across the whole month. As we know primary disease doesn’t kill but SBC does and that’s where the focus should be – awareness and research. In the UK 31 women die every day from SBC and this hasn’t changed for years.
This is why METUPUK are promoting our #IAmThe31 campaign to raise awareness of SBC.
I have worked for 6 years to get this message across with my infographics and finally the NHS are signposting to them. I have worked with Greater Manchester Cancer for them to use them in their Personalized Care Plans for primary patients. I’m hoping that this document will be a gold standard that the Cancer Alliances then can use in other hospitals. This document will also be sent to your GP so that will also create awareness there.
Drug access is a problem for many patients as there are many inequalities not just NHS vs private healthcare but also in the NHS across many aspects of care and with drug lines as again England, Scotland, Wales and N Ireland all have different guidelines with treatment lines and this causes inequalities across the devolved nations.
Radiotherapy – some of these treatments are not available to all patients on the NHS again creating further inequalities
Surgery – we need specific pathways for secondary cancer patients as some patients don’t get the option of surgery for some metastatic disease then support and rehab after isn’t available.
Clinical trials – not everyone gets offered clinical trials or told about them or at a time when they are able to participate in a clinical trial. We need better drugs with less side effects and toxicity.
Data and statistics – 8 years ago it was suppose to be mandatory to collect data and there are still problems with data inputted and it being reported. I’ve worked on this for 5 years.
These are the issues that METUPUK are addressing with our aims and objectives and these will make a difference to patients and increase survival outcomes.
People in the USA think that our NHS is a great system but we have just as many inequalities of care as they have, in fact more as the majority of patients in the UK really get sub standard drug access and have to wait for approval of drugs over here which can sometimes take up to 2 years as per the report 2 years ago by the ICR about drug access. The approvals system with NHS, pharma and NICE needs to be revised.
Until we get create some urgency with all this then we are going to continue to die 31 a day, 1000 a month, 11500 every year and this has to be addressed.
Hope this gives you some idea of the problems we have.
Jo
Founder of abcdiagnosis & METUPUK
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Wow thanks Jo for taking the time to leave such a detailed comment – much appreciated!
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October, breast cancer awareness, one month, eh? It is not a holiday we prepare for and celebrate that comes and goes quickly with fanfare and flair like others throughout the year. But it sure feels like that at times, doesn’t it?
It is a stark reminder that hundreds of thousands of women and men live with and die from a disease we have yet to find a cure for. When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often. Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.
I am an educator and have been my entire professional life. Education is empowerment. We can only talk out loud about breast cancer awareness by providing resources and information. This is why I am grateful to Marie for asking us to bring our thoughts to the table this month. She has been one of those mentors to me raising the bar on how to share information on social media.
Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.
The global community of surgeons, oncologists, oncoplastic surgeons, physical therapists, tattoo artists, and especially patients, continue to bring awareness to breast cancer every day I sit at my desk to learn more.
This month, I am taking each day on social media to share their information, my own story, and those of the breast cancer and breast reconstruction community and including in my posts these words, “#BreastCancerAwaresnessMonth Actionable item!”
I welcome comments, feedback, experiences, and other pearls of knowledge you can share with me. We learn from each other. Together we can share what it is like to choose reconstruction, choose optimal flat closure, understand the financial disparities and toxicity of breast cancer, living with the disease, mourning our losses, and continue awareness throughout the year.
There! I made it through my entire comment without mentioning the four-letter word…. that color that represents the month but not the true spirit of breast cancer awareness!
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Terri thank you so much for weighing in with such great comments here – really appreciate it.
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