Journalists and Celebrities, Say Its Name: Metastatic Breast Cancer

We have had our news feeds darkened of late by the news of a line of celebrities fighting, and sometimes dying, of cancers, especially breast cancer. Yet, inevitably, it seems, journalists say they die of  or are “battling” common, everyday cancer. That’s not entirely true, and the community of MBC sisters is perplexed: why won’t journalists and celebrities say its name?

Metastatic Breast Cancer

Metavivor.org likes to drive home this all-important point this time of year — the pink season. Cancer that never leaves the breast never kills. Cancer that leaves the breast travels to bones, lungs, liver, brain and beyond, beginning that race against time and quality of life that you gentle readers have been kind enough to follow with me.

Like it or not, it is Metastatic or Stage IV Breast Cancer that kills. There’s no “beating it” but many of us will be fortunate enough to be able to throw everything we’ve got at it for many years, even decades.

Or not. The average length of time women live following a stage IV diagnosis is 3 years. I technically observe that very cancerversary this pink month, thank you.

Why, then, does a prominent journalist die of “complications of breast cancer?” I understand she didn't want to be known as an MBC lifer while she was alive, but understanding her situation will help move folks to support research. Journalists, call it by name!

Metastatic Breast Cancer

Why won’t a famous musician admit that she is Stage IV and is dying? Instead, she promotes her hospital and her husband’s cannabis business. Apparently, it’s bad for business to admit you’ll die of the disease.  (Update: she has announced she is stage IV now.) Celebrity, please call it by name:

Metastatic Breast Cancer

It seems to be journalistic tradition to be ignorant of the details of metastasis. Journalists know vaguely that cancer kills, but to them it's all the same. Perhaps that’s why a certain game show host’s happy reports of progress against Stage IV pancreatic mets are accepted uncritically, despite it taking a mere few weeks before it rapidly recurs with a vengeance.

Like many metastatic cancers, stage IV pancreatic cancer's main quality is how lethal it is. Why would journalists be complicit in suggesting he "beat" the disease?  Pancreatic Cancer ranks behind Breast Cancer in lethality - a grim competition in which no one wants to participate.

Here’s why this behavior — this unwillingness to name and understand Metastatic Breast Cancer — is actually harmful for the rest of us:

• Some 30% of women who fight breast cancer will eventually move on to develop Stage IV cancer. That means resolving the challenge of Metastatic Breast Cancer improves every survivor's chances.
• Only 2 to 5% of cancer research funds are dedicated to understanding metastatic breast cancer, or finding solutions to extend the lives of MBC patients. We are woefully behind on this. Komen only gives 7% to actually saving our lives.
• There is no cure. There are many great therapies. We might get decades from modern treatment, but we will eventually die of the disease — or its complications. And we will always be treating our disease. Few of us ever get a break from the relentless side effects. (On this, I am luckier than most right now!)

Metastatic cancers are a whole new world. Yes, having cancer is tough; I know. I've been at this since 1996! But having metastatic cancer is a lifelong, never-ending series of physical and emotional challenges designed to keep you on this plane of existence as long as possible against a disease that intends to remove you from it. It changes everything. But you know that, because you read my blog!

It would be nice if our celebrities and journalists admitted this. If awareness saves lives, imagine how great it would be if we actually understood what it is about cancer that kills, and we dedicated our efforts toward saving lives for real. 

For these reasons alone, I would like to see the end of the phrases “died of breast cancer,” or “died from complications of breast cancer.” It’s a misstatement. Again, cancer that never leaves the breast cannot kill. Metastatic Breast Cancer kills. I ask that celebrities please ensure that journalists understand exactly what they are dealing with:

Metastatic Breast Cancer

No more sugar coating it; because it is the coating that is, in part, killing us. We want so much to think that doing pink is doing something. It is not. Save all your October pink money and dedicate it to one of the truly life-saving organizations: 

Metavivor.org

Metastatic Breast Cancer Network 
Living Beyond Breast Cancer 

Update: The Ibrance is helping, it appears. My PET is not clear, but it shows that everything that remains seems to be moving in the right direction once again. That is remarkable, for an $11,000/month drug. (No, that's not a typo.)

Happy October. Let's go back to celebrating with Halloween colors.