We need to talk about Metastatic Breast Cancer

While this is first and foremost a travel blog, I need to talk about breast cancer today. Specifically metastatic, or Stage IV, breast cancer.

When I was diagnosed nearly two years ago, I knew a little about metastatic breast cancer. I knew that it was breast cancer that had spread to the bones or vital organs. I knew that it killed. But I also assumed that those who had metastatic breast cancer (or mets, as it’s called) were diagnosed with it from the beginning. I breathed a sigh of relief when my full body scans came back showing no sign of mets and figured that all I had ahead of me was a tough year and then I’d be done with this cancer thing – forever. Of my family and friends who had fought cancer, none of them had ever had to face it more than once.

As I delved deeper into my research as to the beast I was facing, I kept reading about “metastatic recurrence.” There, I learned that even after aggressive treatment, breast cancer cells could still resurface in the bones and organs. I learned that this could happen 5, 10, 15, even 25 or 30 years after initial treatment. I learned that being initially diagnosed at Stage I or with clear lymph nodes did not guarantee a life free from mets – cancer cells could still slip by through the bloodstream. And I learned that those diagnosed with mets at first diagnosis are actually in the minority. 10% of mets patients were diagnosed from the start. 90% were diagnosed through a recurrence. And since metastatic breast cancer is what kills, that meant that 90% of those who die of breast cancer once stood where I stand – diagnosed early stage.

I also learned that despite catchphrases like “for the cure,” a paltry amount of money is put towards research, compared to what is put towards awareness. (I realize that it’s still much more research funding than other types of cancers get.) That infuriates a lot of people, myself included, because research is how we will a) learn how to prevent breast cancer from happening in the first place, b) learn how to prevent it from spreading and c) find treatments that will prolong and hopefully save women’s lives.

I am alive and healthy nearly two years after my initial diagnosis. I do not owe that to awareness. I do not owe that to giant bra sculptures and pink coffee cups. I owe that to chemotherapy, targeted therapy, surgery, radiation and hormone therapy. All developed through research.

Still, it is extremely frightening to not know whether I will remain healthy and cancer-free. A headache, a back ache, a stomach ache can all send me into panic mode as I imagine the cancer spreading through my body. The possibility of dying young from this disease casts a dark shadow on everything in my life. As Younes and I talk about building our family, I worry about leaving future children motherless. Younes is currently pursuing a career in trucking, even though he’d much rather work in a different field, because it has great benefits and he doesn’t want me to have to carry the burden of maintaining health insurance. Every birthday, every holiday, every vacation, I wonder if I will be healthy enough to enjoy the next – or if I will even still be here.

The only thing worse than fearing mets is living with mets.

Through FB groups, message boards and blogs, I have come into contact with some amazing women who are living with mets. Some are doing well – and they live in a constant state of limbo, caught in the gray area between chronic and terminal. Some are not doing well – and they live with the pain, fatigue and other complications of the both the cancer and the never-ending treatment. Some have already been lost to this disease.

Why do I bring this up today? Unless you have been living in a cave, you know this is Breast Cancer Awareness month. Today specifically, October 13th, is Metastatic Breast Cancer Awareness Day. It’s a day to educate about MBC and to push for funding for MBC. It’s also a day that has been hijacked by a super sensitive, well-thought out campaign (sarcasm dripping here) called No Bra Day. I didn’t know “facilitating masturbation” counted as a good cause. I’m pretty Zen about the whole losing a breast thing – hey I’m alive, right? – and even I get twinges of envy seeing stuff like that. It’s the exact opposite of supportive, in more ways than one.

So, if you want to support those affected by breast cancer today, keep your bra on and donate to research. My two favorite organizations are The Breast Cancer Research Foundation and Metavivor.

A few more links:

Three minutes. No speaking. So much education.

Voices of MBC

Another great resource

We need to talk about Metastatic Breast Cancer

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