Raising Awareness About Metastatic Breast Cancer, It’s Personal

BY Nancy Stordahl

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Another Breast Cancer Awareness Month has come and gone. Are you relieved? If so, you’re certainly not alone.

I try to view October as the month to be extra ‘loud’ and one of the things I try to be ‘loud’ about is talking about metastatic breast cancer. I’ve said it before (as have many others) and I’ll say it again, breast cancer awareness without mets awareness isn’t awareness at all.

For me it’s personal.

My mother died from metastatic breast cancer in 2008. My mother’s name was Jual and she was exactly that, the “jewel “of our family. I have seen too many friends die from this disease as well. If you’re reading this post, your life or the life of someone you care about, might very well have been impacted by metastatic breast cancer too. Or perhaps you are dealing with a stage 4 diagnosis yourself.

It used to be, I’d sometimes hesitate to publish posts on metastatic breast cancer because I am not living with it myself, so of course I don‘t really know what living with it is like. 

I often thought how can I speak out about it?

What right do I have?

While it’s true I’m not living with mets myself, I also realize this could change at any time since about 25-30% of breast cancers do go on to metastasize at some point regardless of stage at diagnosis. I realize my family gets nervous when I talk about such things, but this is reality. Not talking about something doesn’t mean it’s not real. This possibility is generally pushed to the back of my mind. I don’t dwell on it, but I don’t hide from the facts either.

Unfortunately, I do know a lot about metastatic breast cancer from a daughter’s point of view and from a friend’s point of view. When you witness the suffering and death of a loved one to metastatic disease of any kind, it changes you.  Still, I realize this witnessing is nothing like living with a stage 4 diagnosis yourself.

Perhaps another reason for the hesitancy some of us feel when it comes to speaking out about metastatic breast cancer might be fear.

There is the fear, or perhaps it’s more an uneasiness, about possibly offending or upsetting someone who is living with metastatic disease. No one wants to step on toes or unintentionally dampen anyone’s hope. I certainly do not wish to do so. But let’s be serious, it’s not like most who are dealing with a stage 4 diagnosis have not heard the statistics or are unfamiliar with what a stage 4 diagnosis means. My stage 4 friends do not need protection from reality.

Perhaps part of this fear also stems from the old, “If we don’t talk about it, maybe it’ll just go away, or at least we don’t have to deal with it,” denial mentality which of course, in the long run helps no one.

In the pinked-over version of Breast Cancer Awareness Month, this has been going on for years now, be it unintentional or not. For the most part in years past, metastatic breast cancer has not been spotlighted during October, or any other time of year for that matter. Mostly, it’s been left in the shadows. Thankfully, this is changing, but not nearly enough or as quickly as many of us would like.

It’s time to push the metal to the pedal so to speak. It’s time to say enough of being over-looked, under-funded and shoved out of the pink parade.

We need to talk about metastatic breast cancer not just during October, but all year long. And all of us who are willing and able need to do it. We need to keep being ‘loud’; in fact, we need to get even louder.

I intend to continue pushing for genuine breast cancer awareness, the kind that also includes the stories, struggles and needs of the metastatic community; the kind that pushes for better treatment options to extend lives without destroying those lives’ quality, the kind that demands that more dollars be earmarked specifically for research to help better understand and ultimately prevent metastasis in the first place.

Let’s keep pushing. Let’s keep aiming higher. Let’s keep being ‘loud’.

Let’s keep this conversation going and not just in October, but all year long.

Nancy Stordahl blogs at Nancy’s Point and is the author of the book, Getting Past the Fear:  A Guide to Help You Mentally Prepare for Chemotherapy.
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