It is very important to me that I share what I know. Breast cancer is not all you think it is. It’s not all I thought it was - before I actually started educating myself. There is a lot to know…more than you will ever learn at most breast cancer related events and more than I can convey in this long post.
As many of you might already know, in 2013 at the age of 37, I was diagnosed with Breast Cancer. My cancer was found at Stage 1. This is good for all intents and purposes but still a devastating diagnosis that comes with lifelong impact (often underestimated).
What many don't realize is that this early finding of my cancer and my current “healthy” status DOES NOT guarantee that the same nasty little breast cancer cells are all gone necessarily. In fact, they could be in my body quietly remaining undetected. These crazy cancer cells can do this for many years or even decades before activating again and then causing symptoms that would later result in a Stage 4 Metastatic Breast Cancer diagnosis (cancer that spread beyond the breast). Breast cancer cells love to move to our bones, lungs, livers and brains.
Science and statistics tell me it’s not likely but we all know science and statistics aren’t always reliable. And cancer is the furthest thing from reliable. So it remains a reality I’m in touch with and an ever present danger that I am all too well aware of. ALL the time.
So…
Do you know the meaning of METASTATIC (Stage 4)?
Do you know that the only breast cancer that kills is Metastatic Breast Cancer?
Do you know that after 30+ years of AWARENESS “FOR THE CURE” there is STILL NO CURE?
Do you know that finding breast cancer early is NOT the key to saving lives?
Do you know that mammograms serve a purpose but also DO NOT save lives?
Do you know that 6-10% of all new breast cancer patients at diagnosed Metastatic from the start?
Do you know that 30% of all early stage patients later become Stage 4 and we don’t know why?
Do you know that just because you have hair - doesn't mean you're well?
Do you know that this a not just your "Grandmother's disease?"
Do you know that 40,000 people in the US are dying every year from Metastatic Breast Cancer?
Do you know that we're not tracking progression of Early Stage Cancer to Metastatic (giving a false survival rate)?
Do you know that “awareness” campaigns don’t save lives?
Do you know that Metastatic disease is treated like a dirty little secret?
Do you know that the average life expentancy of a Metastatic patient is 3 yrs?
Do you know that ONLY 7% of all breast cancer research money is used on Metastatic Breast Cancer?
Do you know what a person with Metastatic Breast Cancer looks like? See #iamsusan
Do you know that 60% of people know VERY LITTLE about Metastatic Breast Cancer?
Do you know that more and more YOUNG WOMEN are being diagnosed with Metastatic Breast Cancer every year?
Do you know that men get breast cancer?
Do you know that Saving TaTas is NOT equal to Saving Lives? And it’s incredibly offensive!
Since the day I took my first breathe on this planet 40 years ago, the number of annual deaths from Metastatic Breast Cancer has remained unchanged. In my lifetime alone 1.6 MILLION Americans have died from Metastatic Breast Cancer. This will continue without more research funded in the right direction.
THIS HAS TO CHANGE
All those pink ribbons and merchandise that you think are contributing to a good cause to "FIND A CURE" probably (in all likelihood) are not doing anything at all to find a cure. The majority of the money raised by events and merchandise is squandered on yet more events, more merchandise, more marketing, more "awareness", people's salaries and big non-profit overhead costs and NOT ON A CURE.
The only thing that helps find cures or life extending treatments is SCIENTIFIC RESEARCH.
There is a big push to help facilitate this long overdue shift. Groups have organized like METUP.org (inspired by ACTUP and the AIDS Crisis). Congress is being pressured to finally allocate fair amounts of research dollars to match the percentage of those impacted 30% for 30%. There is a slow but growing shift in the collective consciousness about the stale mission of “awareness” campaigns and the fun, pretty, pink, party-like, and all too often sexualized manner in which breast cancer is portrayed. It isn’t fun. It isn’t pretty and it certainly isn’t sexy. And something many may not realize – it’s not about breasts in the end. It’s about lives.
What I've discovered since my diagnosis is that I knew very little about breast cancer. Even my first year of being a breast cancer patient was pretty uninformed when I look back and realize all I know now. Until you're deeply impacted by cancer (or educated by someone who has been) you’re probably in the dark about what is really happening to people who are living with and dying from it.
So I beg you - with all your good intentions - to think twice, to pause and to reconsider how you support causes like breast cancer or any other disease or cause close to your heart and ask the important questions. These questions matter.
Does this charity do what they say they will do?
How IS this money being spent?
How might it be better used?
Who benefits from my donation?
You can find almost any legitimate charity/non-profit and see their ratings and financial reports (any good organization will be transparent) on charitynavigator.org
If you find it in your hearts to donate to breast cancer in the future I would implore you to consider donating to METAvivor.org because they are run entirely by volunteers (who are living with but also dying from metastatic breast cancer) and they use 100% of their donations to fund research to the only kind of breast cancer that kills - METASTATIC breast cancer.
I know for me personally, that's the organization I support because I have TOO MANY friends who are Stage4 and I want them to live – not die. And in the event I someday become Stage 4, I want to know that I helped support the only research that might actually help me stay alive.
In the meantime I’ll be over on my other Facebook page; Bravery Grace & Badassery – where I do the majority of my advocating, educating and sharing of information. I hope you’ll wander over there to follow or simply check in on occasion to see what’s new. There is a lot happening these days.
If you want some great site recommendations to visit regarding breast cancer here are my top picks.
Metavivor.org
BCRFCure.org
MBCN.org
Breastcancer.org
LBBC.org
METUP.org
MBCAlliance.org
IAMSUSAN - on Facebook is remarkable!
Thank you for reading this. I love you heart emoticon.
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