I wrote this post originally for my CaringBridge website, but I got several requests to share it more widely, and this blog is a good forum to do so. Please take a minute to click through to the links, this is very important.
You would think that this past month of Breast Cancer Awareness, where everywhere you look are pink ribbons, would have been a happy month for me. It's my month, right? When everyone is focused on the disease that radically changed my life almost a year ago. Well, the truth is that, no, I didn't feel happy about all the pink this past month. It actually got me down, and it turns out I'm not alone. There is an undercurrent in the breast cancer community that wants to raise awareness, not about breast cancer itself (is there really anyone who isn't aware of breast cancer?), but about where all the money raised during "Pinktober" is going. And about the realities of breast cancer, especially metastatic breast cancers, which is what I was diagnosed with last December. The reality is that no one dies of breast cancer that stays confined to the breast. A few women (& men) die of the treatment used for a cancer that stayed in their breast, but otherwise anyone who dies of breast cancer dies after the disease has spread (or metastasized) outside the breast, often to the liver, lungs, bones, or brain. My cancer had already spread to the liver, lungs, and bones when it was diagnosed. I've been reading a lot of blog posts and articles about these issues this month, and I'd like to share some of these with you that I found most poignant and informative. There's really two issues that have been on my mind lately regarding breast cancer: the truth behind all that pink advertising, and the truth about metastatic breast cancer.
First the truth behind all that pink. I think we've all heard that we should check into the charities that we choose to give our money to. But somehow that seems to go out the window when faced with all the cute pink products that are out there, or even the "normal" products that are pinkified every October. Where is the money for these products really going? And even if it's a reputable charity, what are they using the money for? Turns out that very little of the money that we think we're giving "for a cure" is going to towards research, which is really the only way we'll find a cure. I have no problem with charities that are primarily raising money for patient support or advocacy, but we should know where our money is going. And also think about the motives behind the pink item we have in our shopping cart. Did the company slap a pink ribbon on their product (which may not be all that good for you, like the pink Kentucky Fried Chicken buckets) just to try to get you to buy it? I personally would rather give my money directly to the charity (or charities) that are using that money to fund the causes that I really believe in and that are reputable, using the majority of the money for the cause, as opposed to overhead or advertising. Here are a couple links that give more details and explain this issue better than I can:
This pink issue has been on my mind this month because of the onslaught of pink products everywhere you look. I never even noticed this before, and probably bought some of those pink products, thinking I was doing a good thing. And I'm not saying its not a good thing, I'm just wishing consumers were mindful of where their money is going instead of succumbing to the "tyranny of passive consumerism," as mentioned in the Ottowa citizen article linked above.
Second, the truth about metastatic breast cancer. This one is on my mind year-round, because this is the disease I am fighting. It's the disease that kills almost everyone who dies of breast cancer, and yet it only gets 3% of the funds directed towards breast cancer research! The statistics for the number of people who die of metastatic breast cancer hasn't changed significantly over the last 20 years, despite all the awareness raised with all the pink advertising every October. This article gives you the facts about the disease I'm facing. It's incurable. Unless you happen to die of a car accident or something like that, this will be the cause of death of everyone who gets it. But I like to focus on #11 on that list, "Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives." Although I am in the rare 6-10% of people who are Stage IV from the initial diagnosis, I also hope I am among the "some" who live long and productive lives. But having this disease, and being Stage IV from the beginning, I feel like I don't fit in with the pink, hopeful stories that dominante this month. I'm the ugly step-sister that other cancer survivors don't want to hear about, because I represent their worst fears. Everyone who has been diagnosed with breast cancer fears that their cancer will spread, that it will come back. I never had to live with that fear because mine spread before I ever knew about it. Here are some more articles focusing on metastatic breast cancer:
I have recently discovered the organization METAvivor, which was started by a woman living with metastatic breast cancer. Their newest initiative, launched this month, is called 30% for 30%. As stated on their site, "Since thirty percent of all breast cancer patients develop MBC [Metastatic Breast Cancer]-- a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC." At this time, doctors have little knowledge about why a cancer will spread or how to prevent it from doing so. It seems that the seeds for metastasis are sown before the primary tumor is even big enough to be detected. About 30% of people with breast cancer have or will develop metastases, and this number hasn't changed significantly over the last 20 years. As the Metastatic Breast Cancer Network said, "Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms." So all the awareness to get people to have mamograms & do self-exams has NOT changed the number of people whose cancers spread or the number of people who die of metastatic breast cancer. Imagine the knowledge we could gain and the lives that could eventually be saved if more money went towards researching why cancer spreads or how to keep it from doing so instead of more awareness.
I hope this post doesn't bring anyone down. I've had these issues on my mind all month, and I want to do my part to raise awareness of both the issues behind "passive consumerism" and the truth of the disease I'm living with every day. I hope you spend a bit of time clicking through to some of the links above and learning a bit about these issues, so that you can be a more informed consumer and just generally be more informed about metastatic breast cancer.