10/13/10

Metastatic Breast Cancer Awareness

Today is Metastatic Breast Cancer Awareness Day.

It's a good thing that there is a day specifically aimed at getting people to think about Metastatic Breast Cancer.

Because let's face it, we don't want to think about it. If we know someone who has breast cancer (and there are few out there who don't, even if they aren't aware of it), our greatest fear is that our loved one will move on to Stage IV. If we are someone who has breast cancer, or who is a breast cancer 'survivor', our greatest fear is that we might some day move on to Stage IV. If our loved one has metastatic disease, we fear and grieve for them, because we know that there is no cure and that there is a 97% chance that their cancer will kill them (painfully and cruelly)... and a 80% chance that it will do so in less than 5 years**.

And if we are in that population of folks with Stage IV Breast Cancer... well, we know we are the walking dead.

What's more, everyone else knows it, and they treat us that way. Even if they don't mean to. Some treat us with greater kindness, because they know they will not have us for long. Others avoid us, as though we were contagious. Many try to shut us up or force us to pretend that we are other than what we are, by telling us that we might not die ('they could find a cure tomorrow'), or by telling us that it's all in our attitude (by inference, we got here through bad attitude, and are dying because we are not simply turning our frowns upside-down).

Even the organizations that are supposedly on our side ignore us and cover our scariness by lumping us in under the generic label 'Breast Cancer Survivor'. Ironically, it is the very fact that we are not survivors that makes them want to pretend we are not there. We are the Monster Under The Bed; we are the future for many of them, the future they are most afraid of, the future they are most anxious to avoid. We are the reason they ingest poison and suffer radiation, in hopes of escaping the teeth and claws of the Monster.

They have good reason to be afraid. More than half of all hormone-negative breast cancer patients will experience a recurrence, and even those in the lowest risk group - hormone positive cancer patients who have received all the standard treatments - have a 42% chance of recurrence. And recurrence means a greater chance of metastasis.

We are the keepers of the Monster, and that makes us scary. But we are also You, your mother, your sister, your partner, your best friend. And that makes us Beloved, and Important, and Precious. We are well worth saving.

Yes, it's a good thing that there is a day set aside for Metastatic Breast Cancer Awareness. But I can't help but wonder why we are only given a day, rather than a week. Metastatic disease is currently incurable, and we haven't gotten very far in controlling it or treating it. The treatments available are largely toxic and often are harder on our quality of life than the disease itself, and sometimes kill us off more quickly than the cancer would. The pharmaceutical companies themselves admit that there is little solid evidence that chemo significantly prolongs the life of even those who have a good response (as measured by tumor stabilization or regression).

Yet we spend less per week on research to cure metastatic breast cancer (and thus all breast cancer) than we spend on one cup of coffee per capita during the same week. And most of the research that is being funded is funded by pharmaceutical companies whose profit, and therefore whose funded studies, are invested in current (non-curative, toxic) treatments, rather than in development of new, less toxic, and potentially curative treatments.

Wouldn't it be easier to sweep the Monster Under The Bed away by funding research for a cure for metastatic cancer, rather than by refusing to look in our direction?

Be more aware of Metastatic Breast Cancer. Spend a whole week thinking about it. And if you can, spend some money on it, too - give to organizations that are funding research that is radical and groundbreaking and potentially curative, like the Breast Cancer Research Foundation or Stand Up 2 Cancer, or give to an organization that directly helps people who are suffering with breast cancer, like many of those listed by BreakAwayFromCancer.com.

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**Keep in mind that this statistic is misleadingly optimistic. In that 'surviving' 20% are the folks who die the day, week, month after their 5-year anniversary. On the other hand, if you are lucky enough to make it that 5 years and are relatively healthy by that time, your chances go up of making it another 5 - only half of that group will die in that time.

2 comments:

Nancy K. said...

I didn't know that today was Metastatic Breast Cancer awareness day. What's wrong with THAT???

Thanks for some excellent suggestions on how we can make a difference.

Delighted Hands said...

You are doing your part to educate us-I always learn something to pass along from you. Thank you.