Wednesday, October 2, 2019

The Elephant in the Pink Room, Metastatic Breast Cancer

It's that time of year again, Pinktober, or October Breast Cancer Awareness Month.  I've got a whole new take on this now that I've got a PhD in cancer camp.  I survived a Stage 3 diagnosis of invasive lobular carcinoma breast cancer and had 5 months chemo, a bilateral mastectomy, radiation and tamoxifen.  Well now if this ain't a bitch, over eight years from that diagnosis thinking I was 'cancer free,' I was diagnosed with Stage 4 or metastatic breast cancer.  Before you go pink, with all its ribbons and bows, cutesy Tshirts and memes that say things like "Save the Tata's" I'd like you to hear a new perspective on this from someone diagnosed with what is considered incurable.  Stinkin Pink Tink, that's me.  Oh and by the way, with all your good intentions, copying and posting breast cancer memes on your social media never helps anybody no how no way.

There is a big ol elephant in the Pink Room that nobody wants to talk about. There is a serious lack of funding for the only breast cancer that kills.  You rarely see these words "metastatic breast cancer" on any of the cheerful hopeful posts by some of the largest cancer organizations.  It's the breast cancer that no one wants to acknowledge or talk about, even though it is exactly the one that most of the focus should be on.  Metastatic breast cancer aka MBC, or Stage 4 breast cancer.  Considered terminal or incurable, with 40,000 US women still dying of it every year.  Despite the hell I went through over eight years ago, looking back now losing my "tatas" is the least of my worries now.

I was very sad to hear of the passing of esteemed and legendary journalist Cokie Roberts. After that reality slap in the face, it was like a kick in the gut when every news outlet described her death as "complications from breast cancer.' What in the hell?  Call it by its name! Say it.  If you want October to spread awareness about breast cancer, then we need to educate people on MBC.  Nobody dies when breast cancer is just in your breast or a few lymph nodes.  It's when that same cancer spreads to other parts of the body or metastasizes that it is considered incurable.  All of the current treatments for MBC won't cure it, they are merely a stop gap measure to enhance progression free survival before inevitable death.  The median survival after an MBC diagnosis is three years!  Three years!

Stage 4 needs so much more.  It is so disheartening that so very little of the millions of dollars raised for breast cancer doesn't go towards the breast cancer that kills, but continues to go towards pink ribbon campaigns, so called awareness and early detection. How bout early prevention, and how bout a lifeline for those of us way past that?  I often posted here "I hope I am in the one in your eight." This refers to one out of every eight women will be diagnosed with breast cancer in her life time.  Now I'm learning that one out of three of those will go on to metastatic breast cancer, and ultimately die from it.  All the hype about early detection isn't good enough when 30% of early breast cancer diagnoses still go on to MBC even years later.  I used to think 'Wow I made it past five years, "cancer free"lucky me!  With every year after that I looked over my shoulder less and less. Little did I know the statistics about MBC or secondary breast cancer coming back years and years later.

Metastatic breast cancer is like the dirty little secret of Pinktober.

Pink doesn't cure cancer.

Men get breast cancer too.

Research is desperately needed.  Dedicated dollars towards MBC research.

Stage 4 needs more.

We are coming out of the shadows.

We be dying out here.









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