Women with metastatic breast cancer: feeling alienated during Breast Cancer Awareness Month
But what if the party invitation – probably pink in color - included a tiny footnote saying that, even though the party was for you in name, you would be barred at the door from entering? Because your mere presence at the festivities was a downer?
This is how some women with metastatic or Stage 4 breast cancer feel about October, National Breast Cancer Awareness month. During this month of pink and circumstance, saturated with the message that if we become aware of our risk, get our mammograms religiously and invest in all kinds of pink-themed products, walk, run, chant and stay positive, we will not only survive the beast, but thrive in spite of it. It’s a message of hope and strength (and not incidentally, corporate profits), which satisfies our need to be in control of a frightening disease which affects more than 200,000 American women each year.
Only it’s not true.
Women whose breast cancer has advanced to Stage 4 (there is no Stage 5) have suffered a spread of their breast cancer to another site in their bodies, usually the bones, liver, lungs or brain. Once breast cancer has spread beyond the breast, there is no cure. While some women with Stage 4 breast cancer live for many years past their diagnosis, these women are the exception, not the rule.
Let me say it again – there is no cure for metastatic breast cancer. And the reason this should concern the National Breast Cancer month-“celebrating” public is because “early detection” means almost nothing when you consider the fact that approximately one-third of breast cancer caught at an “early stage” will advance despite having been found “early.” Early detection doesn't assure a good outcome because so many breast cancers are beyond the current curative capabilities of medical science, no matter at what stage they are found, no matter how faithfully a woman keeps her mammogram appointments, no matter how much money is diverted to “awareness.”
So women with Stage IV breast cancer – many of whom were already hyper-aware of breast cancer at the time of their diagnosis, scheduled yearly mammograms, ate healthily, exercised (in the words of one woman on my online breast cancer support group, “did everything right”) feel alienated in the midst of the big “party” celebrating early detection, awareness and hope. They see little recognition of themselves or their needs in the “Pinktober” hoopla. They are dismayed by the party atmosphere that pervades the month, an affront to the reality of the cancer growing in their livers or brains. They are tired of silly messaging that equates “boobies” and “tatas” to the “breast cancer experience” as they undergo painful surgeries, lose their hair to chemotherapy and drag around oxygen tanks. Insulted by large corporations that donate a (usually small) portion of the sale of questionable pink-themed products to the “cause,” but whose bottom lines are the ultimate beneficiaries. Incredulous to hear the message that breast cancer is the “good cancer to have” despite the fact that nearly 40,000 women will die of the disease this year, nearly the same number as succumbed 20 years ago. Enraged when told that maintaining a good attitude will help them to defeat their disease, all the while attending funeral after funeral for their upbeat, optimistic friends.
They want to talk about the more salient issues, like about how only 15% of money donated to certain breast cancer organizations goes to research, a key element in discovering how to prevent or cure the disease that afflicts them. How surgery, radiation, chemotherapy and hormonal treatments are so expensive that in trying to prolong their lives temporarily they may be bankrupting their families permanently. How shocked they were to discover their cancer had advanced, because they had been led to believe that early detection equals a cure. How too many entities (pharmaceutical companies, manufacturers, even some of those running major breast cancer organizations) are profiting from their pain.
I asked the members of my online breast cancer support group what they would like others to know about how they feel about having Stage IV breast cancer during October, the month of “awareness.” Here’s a sampling of their responses:
“Our society likes success stories and happy endings. Why would anyone give us the spotlight?”
“When all of the hoopla occurs every October (I hate it), the entire emphasis is on inferred permanent survival. Those of us at Stage IV know that this will never be for us. While it's true that we have "survived" this year, next year or maybe more, eventually, and likely relatively soon, we will die of our disease.”
“My biggest concern is that all of the awareness is going to backfire. People will start to think breast cancer is curable, mammograms are infallible and breast cancer is no big deal. Well, it’s not curable, mammograms don’t always detect breast cancer and breast cancer is a big deal.”
“People have good intentions when they donate – they just don’t know [the realities of breast cancer].”
“When I was first diagnosed I contacted a local cancer support center and inquired about their support group for newly diagnosed breast cancer patients. I was told not to go to their support group because I (an advanced breast cancer patient) would frighten the other members. OK what else do you have, I asked. We have nothing for you, they replied. So, right from the start I was kicked to the curb by the very people I thought would give me support simply because I am what every early stage woman fears."
“I just wish people would stop asking when I will finish my treatments. I have told most of them so many times I will be in treatment for the rest of my life-there is no finish!!”
“And it seems that the greatly touted "early detection" is simply not an indicator that metastatic disease will be avoided. I wonder if others knew these facts, then more interest, effort and a larger amount of funding would be directed toward a cure rather than "awareness."
Breast cancer is not pretty. It’s not pink, it’s not cute, it’s not a cupcake, a ribbon, a “ta ta” or a marketing opportunity. It’s unpredictable, stealthy and too often deadly. The realities and needs of women who are living with advanced breast cancer must be recognized not only during October, but all year, despite our fear, because only by acknowledging what we fear will we get to the bottom of this awful disease.
Joan Oliver Emmer blogs at Body of Work.